Pulmonary Fibrosis Resource Library
These resources will help you better understand what PF is, the causes, symptoms, and what to expect as PF progresses.
What is PF?
Pulmonary Fibrosis (PF) isn’t just one disease. It is a family of more than 200 interstitial lung diseases (ILDs) that cause inflammation and/or scarring of the of the lungs. Over time, normal lung tissue is destroyed, rendering them unable to provide the body with sufficient oxygen. Although currently there is no cure, many people living with PF can be helped with the right treatment, support, and for some, lung transplantation.
People living with pulmonary fibrosis (PF) and their family members often find it difficult to get clear, and consistent information about this disease. The purpose of this guide is to help provide an easy-to-understand, accurate overview of pulmonary fibrosis for patients and their caregivers. Read the Pulmonary Fibrosis Patient Guide to learn about pulmonary fibrosis signs, symptoms and causes. Plus, get insights on PF diagnosis, treatment, and disease management.
Please remember that this information is a brief overview and is for educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your health care providers with any questions regarding specific medical conditions.
Pulmonary Fibrosis Patient Guide
Guide du patient sur la fibrose pulmonaire
Created for people living with IPF and their families this handout provides information on what idiopathic pulmonary fibrosis (IPF) is, signs and symptoms, how your doctor will know you have it, tests you may need, treatments, and where to get more information. Download the UHN Idiopathic Pulmonary Fibrosis Handout.
Get answers to commonly asked questions about pulmonary fibrosis. Check out FAQs
Watch these patient journey videos to learn about pulmonary fibrosis firsthand from people living with this disease.
CPFF Documentary – Breathless for Change
Le parcours de Roy Alderice avec la fibrose pulmonaire
Le parcours de Kerry et Bill Ferguson avec la FP
Kerry and Bill Ferguson’s Journey with PF
Roy Alderice’s Journey with Pulmonary Fibrosis
Karen Wade’s Journey with Pulmonary Fibrosis
Le parcours de Karen Wade avec la fibrose pulmonaire
The Phillips Family’s Journey with Pulmonary Fibrosis
Le parcours de la famille Phillips avec la fibrose pulmonaire
The Schuler Family’s Journey with Pulmonary Fibrosis
Le parcours de la famille Schuler avec la fibrose pulmonaire
The Khan Family’s Journey with Pulmonary Fibrosis
Le parcours de la famille Khan avec la FP
Finding Hope & Healing as a PF Caregiver – Sandi Bjorgum
Grieving What Was & Finding Acceptance for What Is – Heidi Schollengberg
A conversation about PF with Chris Sadleir
Discussion sur la FP avec Chris Sadleir
Stan Hendriksen’s Journey with PF
Le parcours de Stan Hendriksen avec la FP
The Clarke Family’s Journey with PF
Le parcours de la famille Clarke avec la FP
A conversation about PF with Heather and Mark Davidson
Discussion sur la FP avec Heather et Mark Davidson
Talking about PF and Oxygen Featuring Todd Georgieff
Discussion sur la FP et l’oxygène avec Todd Georgieff
Donald Pamenter’s Pulmonary Fibrosis Journey
Le parcours de Donald Pamenter avec la fibrose pulmonaire
A conversation about pulmonary fibrosis featuring Angie Ortlieb
Une conversation sur la fibrose pulmonaire avec Angie Ortlieb
Patricia Meadows’ Pulmonary Fibrosis Journey
Le parcours de Patricia Meadows avec la fibrose pulmonaire
John Dennis’ Pulmonary Fibrosis Journey
Le parcours de John Dennis avec la fibrose pulmonaire
Rob Garbutt’s Pulmonary Fibrosis Journey
Le parcours de Rob Garbutt avec la fibrose pulmonaire
Naomi Matsushita’s Pulmonary Fibrosis Journey
Le parcours de Naomi Matsushita avec la fibrose pulmonaire
André Plouffe’s Pulmonary Fibrosis Journey
Le parcours d’André Plouffe avec la fibrose pulmonaire
Meet Zelick
After complaining of a persistent cough during a regular check-up, 66-year old Zelick was diagnosed with idiopathic pulmonary fibrosis (IPF). Although the diagnosis has been difficult for him and his family, Zelick started on an antifibrotic medication early in his journey and has been able to continue doing the things he loves. Watch his story and hear his advice for fellow IPF patients.
Diagnosis
Pulmonary fibrosis can be difficult to diagnose. In fact, it takes two years on average for patients to receive their PF diagnosis. Patients with PF experience symptoms that are often subtle and similar to other lung disorders. These resources will guide you in conversations with your medical team and help you find specialists near your community.
People living with pulmonary fibrosis (PF) and their family members often find it difficult to get clear, and consistent information about this disease. The purpose of this guide is to help provide an easy-to-understand, accurate overview of pulmonary fibrosis for patients and their caregivers. Read the Pulmonary Fibrosis Patient Guide to learn about pulmonary fibrosis signs, symptoms and causes. Plus, get insights on PF diagnosis, treatment, and disease management.
Please remember that this information is a brief overview and is for educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your health care providers with any questions regarding specific medical conditions.
Pulmonary fibrosis (PF) is often difficult to diagnose, with patients waiting an average of two years for a confirmed diagnosis. Early symptoms can be subtle and mistaken for other lung conditions. These Tackle the Crackle© resources support early detection, help you prepare for conversations with your healthcare team, and connect you with PF specialists and other patients and caregivers near you.
Pulmonary Fibrosis Diagnosis Resources
Learn about early detection, diagnostic tests, pulmonary fibrosis symptoms, other diseases that can progress to PF and more
Pulmonary Fibrosis Patient Guide : Get an overview of pulmonary fibrosis signs, symptoms, and causes. You’ll find insights on diagnosis, treatment, and disease management.
Oxygen Therapy FAQs: These Oxygen Therapy FAQs from ProResp provides tips for safely using oxygen at home
Join Our Pulmonary Fibrosis Community
Patient & Caregiver Support Groups: Connect with others living with PF in your community for the support you need.
Private Facebook Group: Join Canadians who are sharing experiences, and advice to help navigate the PF journey.
CPFF Monthly Newsletter: Get news, research updates, patient and caregiver support, plus more.
Patient & Caregiver Stories
Patient & Caregiver Stories: Every story shared here represents courage, perseverance, and hope in the face of pulmonary fibrosis. From patients navigating daily treatments to families and supporters rallying their communities, these experiences reflect the heart of our mission and can support you through your journey.
Reports
CPFF Patient & Caregiver Survey Reports . Over the years, more than 1700 Canadians living with PF and their caregivers responded to CPFF surveys sharing their experiences living with pulmonary fibrosis (PF), the impact on their lives, and their future needs. CPFF has used these insights to support awareness building, research, and advocacy for improved access to medications, oxygen.
Medical Research Paper: Reliability of crackles in fibrotic interstitial lung disease: a prospective, longitudinal study
IPF and Progressive PF Clinical Practice Guidelines : Idiopathic Pulmonary Fibrosis (an Update) and Progressive Pulmonary Fibrosis in Adults: An Official ATS/ERS/JRS/ALAT Clinical Practice Guideline – published in the American Journal of Respiratory and Critical Care Medicine
Canadian Thoracic Society Position on ILDs : Comprehensive management of fibrotic interstitial lung diseases: A Canadian Thoracic Society position statement
Diagnosis Provincial Resources
Find a Doctor or Walk-in Clinic
Health Insider: How to Find a Canadian Family Physician
Skip the Waiting Room is one way to find walk- in clinics in your area. They have up-to-date schedules, contact information, and let you book appointments online.
Resources by Province
British Columbia
BC College of Family Physicians: Find a Family Doctor
Alberta
Alberta Health Services: Find a Doctor
Alberta Health Services: Walk-in Clinics
Saskatchewan
College of Physicians and Surgeons of Saskatchewan: Finding a Doctor
Manitoba
Manitoba Government: Family Doctor Finder
Winnipeg Regional Health Authority: Walk-in Clinics
Ontario
Ontario Government: Find a Family Doctor or Nurse Practitioner
Ontario Government: Walk-in Clinics
Quebec
Québec: Registering with a Family Doctor
Québec : Inscription auprès d’un médecin de famille
Québec: Knowing clinics that offer same-day or in the following days medical appointments
New Brunswick
New Brunswick Medical Society: Finding a Family Physician
New Brunswick: Be matched with a family doctor or nurse practitioner
Newfoundland
Nova Scotia
Nova Scotia: Find a Family Physician or Other Primary Care Provider
Prince Edward Island
Prince Edward Island: Find a Family Doctor or Nurse Practitioner
Prince Edward Island: Walk-in Clinics
Northwest Territories
Northwest Territories Health and Social Services Authority: Regional Portals
Yukon
Yukon: Find a Primary Care Provider
Nunavut
Watch these educational videos to get insights into the diagnosis of pulmonary fibrosis from world-renowned experts.
Genetics & ILD: A Canadian Primer – Dr. Amanda Grant-Orser & Dr. Kerri Johannson
Navigating a New Diagnosis of Pulmonary Fibrosis – Dr. Matthew Binnie
How is Idiopathic Pulmonary Fibrosis Diagnosed? – Dr. Onofre Moran-Mendoza
I’ve Been Diagnosed with Pulmonary Fibrosis – Now What? Dr. Charlene Fell
J’ai reçu un diagnostic de fibrose pulmonaire… que faire maintenant? – avec Dr Ilan Azuelos
These resources will help you have discussions with your medical team about your pulmonary fibrosis diagnosis.
IPF Handout
This handout for people living with IPF and their families provides information on what idiopathic pulmonary fibrosis (IPF) is, signs and symptoms, how your doctor will know you have it, tests you may need, treatments and where to get more information.
Treatment & Care
Treatment options for PF depend on the underlying cause. These resources give patients, caregivers, and medical professionals comprehensive information about various treatment options for pulmonary fibrosis within Canada.
With ongoing investigation into PF and other diseases that inflame and permanently scar lung tissue, researchers are hoping to stop the disease in its tracks and ease suffering.
(Video) Nerandomilast in IPF and PPF, a New Option On the Horizon – Dr. Shane Shapera
There is no doubt that your family doctor (or nurse practitioner) is the gateway to accessing the health care system in your province or territory. Unfortunately, millions of Canadians do not have a primary care physician. CPFF has gathered some links that may help you to find a family physician, or a walk-in clinic, in your area.
General info
Health Insider: How to Find a Canadian Family Physician
Skip the Waiting Room is one way to find walk- in clinics in your area. They have up-to-date schedules, contact information, and let you book appointments online.
Provincial Resources
British Columbia
BC College of Family Physicians: Find a Family Doctor
Alberta
Alberta Health Services: Find a Doctor
Alberta Health Services: Walk-in Clinics
Saskatchewan
College of Physicians and Surgeons of Saskatchewan: Finding a Doctor
Manitoba
Manitoba Government: Family Doctor Finder
Winnipeg Regional Health Authority: Walk-in Clinics
Ontario
Ontario Government: Find a Family Doctor or Nurse Practitioner
Ontario Government: Walk-in Clinics
Quebec
Québec: Registering with a Family Doctor
Québec : Inscription auprès d’un médecin de famille
Québec: Knowing clinics that offer same-day or in the following days medical appointments
New Brunswick
New Brunswick Medical Society: Finding a Family Physician
https://www2.gnb.ca/content/gnb/en/corporate/promo/accessing-healthcare/be-matched.html
New Brunswick: Be matched with a family doctor or nurse practitioner
Newfoundland
Nova Scotia
Nova Scotia: Find a Family Physician or Other Primary Care Provider
Prince Edward Island
Prince Edward Island: Find a Family Doctor or Nurse Practitioner
Prince Edward Island: Walk-in Clinics
Northwest Territories
Northwest Territories Health and Social Services Authority: Regional Portals
Yukon
Yukon: Find a Primary Care Provider
Nunavut
Nunavut Community Health Centres
Although there is no cure for pulmonary fibrosis, there are medications available to slow disease progression. Learn more about the common drug therapies used for different types of pulmonary fibrosis. Some common drug therapies are described below.
Educational Videos
Generic Antifibrotics: Dr. Fell
Drug Therapy for Pulmonary Fibrosis: Dr. Kolb
Drug Coverage By Province
British Columbia – Pirfenidone – Nintedanib
Alberta – Pirfenidone – Nintedanib
Manitoba – Pirfenidone & Nintedanib (See page 81)
Saskatchewan – Pirfenidone & Nintadanib (See pages 62-69)
Ontario – Pirfenidone & Nintedanib (See pages 374-376)
Quebec – Pirfenidone & Ninedanib – English (See pages 117 & 129) / Français (Voir pages 125 et 137)
New Brunswick – Pirfenidone & Ninedanib – English (See pages 71 & 83) – Français (Voir pages 365 & 378)
Newfoundland & Labrador – Pirfenidone & Nintedanib (See pages 209 & 237)
Nova Scotia – Pirfenidone & Nintedanib (See pages 89 & 104)
Prince Edward Island – Pirfenidone & Nintedanib (See pages 430 & 438)
Yukon – Pirfenidone & Nintedanib (See pages 269 & 285)
Northwest Territories – Extended Health Benefits for Specified Disease Conditions Program (Alberta Blue Cross)
Non-Insured Health Benefits (NIHB) – Pirfenidone & Nintedanib
Medication Information Handouts
These oxygen therapy resources can help you learn more about oxygen therapy benefits, using oxygen systems, and traveling with oxygen.
Supplemental Oxygen Resources
Learn about supplemental oxygen benefits, oxygen therapy systems and more
Oxygen is Medicine Campaign Overview: Learn why oxygen should be classified as an essential medicine
Pulmonary Fibrosis Patient Guide : Learn about pulmonary fibrosis including oxygen therapy. Get expert insights on signs of low oxygen levels, oxygen saturation levels, and oximeters
Oxygen Therapy FAQs: These Oxygen Therapy FAQs from ProResp provides tips for safely using oxygen at home
Provincial Resources
Resources for your province and territory: How to Access Oxygen in Canada
Oxygen Challenges in Canada: Learn about oxygen challenges in your Canadian region.
Oxygen Reports
CPFF Oxygen Access Reports . Learn what PF patients, health care pros and oxygen providers are saying about Oxygen in Canada
Medical Research Paper: Supplemental Oxygen in Interstitial Lung Disease: An Art in Need of Science
Medical Research Paper: Oxygen in patients with fibrotic interstitial lung disease: an international Delphi survey
Oxygen Therapy ROI Report: Accessing the Economic Value of Supplemental Oxygen Therapy and Pulmonary Rehabilitation for Pulmonary Fibrosis in Ontario
Patient & Caregiver Stories, Articles
Article: Home Delivery of Liquid Oxygen not available to PF patients in most parts of Canada
Travelling with Oxygen
Travel Resources: Tips to help you travel with Oxygen
Patient Story: With careful planning you can travel with PF – even overseas
Traveling with oxygen can be daunting. Read the following resources to better understand flying with oxygen on Air Canada.
High Altitude Simulation Testing – Consult your doctor if you think you may need it
Air Canada’s Page on Accessibility Services – Respiratory Devices & Oxygen
Document to Fill Out if Need to Travel with Oxygen on Air Canada
Blog Post on Flying with P.O.C. on Air Canada
WestJet’s Page on Special Needs – Oxygen
Special Needs at Sea – Provide Special Needs Equipment Around the World
Pulmonary rehabilitation (or rehab) is a structured program designed for people living with chronic lung diseases like pulmonary fibrosis (PF). These resources will help you learn more about what rehab programs are, how they work, and how to find them in your community
Pulmonary Rehab Videos
Managing Fatigue and Conserving Energy – Grant Bainard
Practical Strategies for Managing Shortness of Breath and Airway Clearance
The Role of Respiratory Therapists
What You Need to Know About PF and Exercise
Physical Activity and Pulmonary Rehab
One Breath at A Time Exercise Video for People Living with Pulmonary Fibrosis
Exercise Tools
How a Pulse Oximeter can help you when you exercise.
Borg dyspnea (or breathlessness) scale
Rehab Programs and Online Tools
The Canadian Pulmonary Rehabilitation Portal and Program Finder
Living Well with Pulmonary Fibrosis, by Respiplus™ is an online tool that helps patients and healthcare professionals improve the management of pulmonary fibrosis.
Learn about lung transplants in Canada from medical experts and get insights on individual lung transplant experiences from PF patients.
How to Access Lung Transplants in Canada
Lung Transplant Patient Manual (UHN)
Educational Manual
Transition of Care for Pulmonary Fibrosis Patients Candidate for Lung Transplant : An educational manual for parents and caregivers
Dr. Marco Mura, staff respirologist, Western University and London Health Science Centre, has written a manual in lay language to help pulmonary fibrosis patients and their caregivers, navigate the transition of care as they await a lung transplant.
Managing PF
Having pulmonary fibrosis can be an emotional rollercoaster. Friends and family are likely unfamiliar with the disease. It may be difficult to discuss your situation with others. As everyday activities gradually become more challenging, you may need to stop working and ask for help. You may feel angry, stressed, depressed and alone. These resources are intended to help you explore the things you can do to manage your pulmonary fibrosis and live more fully.
Benefits Finder Tool
Find benefits and financial help with everyday expenses or personal tax deductions using this Government of Canada Benefits Finder Tool.
Terminal Illness Disability Benefits
Individuals who have a terminal illness, like pulmonary fibrosis, can apply for the Terminal Illness Application for Disability Benefits under the Canada Pension Plan. Quebec residents can apply for a corresponding benefit from their province.
Terminal Illness Medical Attestation for a Disability Benefits Application under the Canada Pension Plan (excludes Quebec)
Attestation médicale de maladie en phase terminale pour une demande de prestations d’invalidité en vertu du Régime de pensions du Canada (exclus le Québec)
Disability Benefits in the Case of Terminal Illness Under a Public-Sector Pension Plan (Quebec only)
Prestation de maladie en phase terminale d’un régime de retraite du secteur public (Quebec seulement)
Drug Benefits
Prescription Drug Coverage: Ontario Drug Benefit – Seniors Co-Payment Program (SCP) and Trillium Drug Program (TDP) applications.
People living with pulmonary fibrosis (PF) and their family members often find it difficult to get clear, and consistent information about this disease. The purpose of this guide is to help provide an easy-to-understand, accurate overview of pulmonary fibrosis for patients and their caregivers. Read the Pulmonary Fibrosis Patient Guide to learn about pulmonary fibrosis signs, symptoms and causes. Plus, get insights on PF diagnosis, treatment, and disease management.
Please remember that this information is a brief overview and is for educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your health care providers with any questions regarding specific medical conditions.
CPFF Support Groups
CPFF support groups bring together people who are going through similar experiences to share their feelings, coping strategies, and more.
Find a CPFF support group in your community.
Start your own CPFF support group. Get the CPFF Support Group Leader Toolkit.
Wellness Resources
Sleep
Self-care
Mental Health
Mindfulness Meditation
Mindfulness Exercises
Government of Canada Benefits Finder
This online Benefits Finder may suggest benefits from federal, provincial, or territorial governments, and does not collect or track your information.
Living with PF Resources
UHN IPF Information for patients and families
inIPF.com by Boehringer Ingelheim
Pharmaceutical Treatment Information
UHN Handout – Pirfenidone (Esbriet™) – Information for patients
UHN Handout – Nintendanib (OFEV™) – Information for patients
Calculating the Cost of Medical Device Electricity Use
Wellness Resources
Sleep
Self-care
Mental Health
Mindfulness Meditation
Mindfulness Exercises
Air Travel
Air Travel When You Have a Lung Condition
People with lung disease and other pre-existing conditions often find challenges for travelling especially flying and travelling outside their country. From time to time, we will provide links or information that we hope you will find useful.
Have a look at these tips from the International Association for Medical Assistance to Travelers (IAMAT).
Costs
Calculating the Cost of Medical Device Electricity Use
- Look at the label on your concentrator or other medical device that you are using. It states the number of volts and amps the concentrator uses. If not found on the concentrator, look for it in the manual or ask your oxygen provider.
- As an example, we will use 115 volts at 4 amps. To convert to watts (W), multiply volts and amps: 115 volts x 4 amps = 460W.
- Next, calculate the number of kilowatt (KW) hours you use per year. Multiply the watts your concentrator uses by .001 KW/W to convert watts to kilowatts. In our example, 460W x .001 KW/W = 0.46KW.
- Multiply this answer by 24 hours/day x 365 days/year if you are a continuous user. If you do not always have your oxygen on, multiply by the average number of hours used per day and then by 365 days/year.
- To continue the example, 0.46KW x 24 hours/day x 365 days/year = 4,029.6 KWH/Y. This is the kilowatt hours you have used to run your concentrator the past year.
- Now, multiply the above result by the cost per kilowatt hour your electric company charges you. It may be listed on your bill or you could call their office. Let’s say they charge you 8 cents per kilowatt hour (prices will vary widely depending on the region in which you live). To finish our example: 4,029.6 KWH/Y x $0.08 = $322.37. This is the amount you paid for electricity to run your concentrator and can deduct as a medical expense.
Jill Lommer is an exercise rehabilitation therapist who is leading the Breathe Right Exercise Program funded by BC Lung Foundation. Jill is experienced in supporting those living with COPD and other chronic lung conditions. In every class, Jill will include a warm-up, cardio, strength training, and cool down stretches. Suitable for all fitness levels.
CLICK HERE to participate in the virtual exercise program live.
CLICK HERE to view recorded exercise programs.
DISCLAIMER: The BC Lung Foundation provides funding for delivery of Jill’s classes but assumes no further responsibility or liability for those who choose to participate. Individuals are responsible for ensuring their own safety when participating in the activity. They encourage everyone to consult their healthcare provider before starting this or any new exercise program.
Unresolved stress can aggravate an existing illness, such as pulmonary fibrosis, and can affect individuals living with the disease, as well as those who care for them. The mental health resources offer coping strategies to help you adjust to your new normal so that you can improve your quality of life, reduce discomfort and rebuild your sense of self-worth.
Wellness Resources
Sleep
Self-care
Mental Health
Mindfulness Meditation
Mindfulness Exercises
Learn about advance care planning in this webinar featuring Karine Diedrich from the Canadian Hospice and Palliative Care Association, which oversees Advance Care Planning Canada. Karine talks about advance care planning, a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.
Tune in to learn about:
- The five steps of advance care planning
- Starting conversations about advance care planning with the people that matter most to you
- Choosing a substitute decision-maker
Karine Diedrich
Karine Diedrich is the Director, Operations and Engagement at the Canadian Hospice Palliative Care Association (CHPCA). She joined CHPCA as Director, Advance Care Planning in January 2021. Prior to joining CHPCA, she served as Vice-President, Public Engagement and Knowledge Mobilization at Volunteer Canada and National Priority Advisor at the Canadian Centre on Substance Use and Addiction. Karine holds a BA in Criminology from Carleton University and a Professional Certificate in Partnership Management from the Norman Patterson School of International Affairs.
These nutrition resources offer tips on how to manage your disease and maintain your quality of life through nutrition.
Side Effects
Managing Side Effects of Medications Through Nutrition
This handout for people living with IPF and their families provides information on what idiopathic pulmonary fibrosis (IPF) is, signs and symptoms, how your doctor will know you have it, tests you may need, treatments, and where to get more information.
Educational Videos
Healthy Eating for People with Chronic Lung Disease – Jill Anderson
Baking Healthy Cookies with Tracey Reed
#3 Other Lifestyle Strategies That May Slow PF Progression – Tracey Reed
#2 Dietary Strategies That May Slow PF Progression – Tracey Reed
#1 Mast Cells in PF – Tracey Reed
Anti-inflammatory Diet for Pulmonary Fibrosis – Tracey Reed
Nutrition & Pulmonary Fibrosis – Elizabeth McLeod, RD
Digital Resources
UHN Tip Sheet – Nutrition Tips While on Prednisone
Anti-inflammatory Recipes – Cabbage Fennel Apple Slaw & Anti-inflammatory Salad Dressing
Palliative care addresses pain and symptom management and provides social, psychological, emotional and spiritual support, as well as providing support to caregivers and family members. These palliative care resources can help you better understand who might benefit from a palliative care approach and how to plan for the future.
Digital Resources
How to Access Palliative Care in Canada
Educational Videos
Organizations That Can Help
Canadian Hospice Palliative Care Association
Health Quality Ontario
Palliative Care at the End of Life – Health Quality Ontario
This information is meant for Ontario residents, but it does include useful information no matter where you live. If you are aware of other similar programs in your region, please forward a link and we will include them in this section.
- Look at the label on your concentrator or other medical device that you are using. It states the number of volts and amps the concentrator uses. If not found on the concentrator, look for it in the manual or ask your oxygen provider.
- As an example, we will use 115 volts at 4 amps. To convert to watts (W), multiply volts and amps: 115 volts x 4 amps = 460W.
- Next, calculate the number of kilowatt (KW) hours you use per year. Multiply the watts your concentrator uses by .001 KW/W to convert watts to kilowatts. In our example, 460W x .001 KW/W = 0.46KW.
- Multiply this answer by 24 hours/day x 365 days/year if you are a continuous user. If you do not always have your oxygen on, multiply by the average number of hours used per day and then by 365 days/year.
- To continue the example, 0.46KW x 24 hours/day x 365 days/year = 4,029.6 KWH/Y. This is the kilowatt hours you have used to run your concentrator the past year.
- Now, multiply the above result by the cost per kilowatt hour your electric company charges you. It may be listed on your bill or you could call their office. Let’s say they charge you 8 cents per kilowatt hour (prices will vary widely depending on the region in which you live). To finish our example: 4,029.6 KWH/Y x $0.08 = $322.37. This is the amount you paid for electricity to run your concentrator and can deduct as a medical expense.
Vaultt, is an app that helps patients, families, and caregivers securely organize, track and share vital health information. In this webinar Audrey Bond, founder, and CEO of Vaultt presents insights into how patients with chronic diseases and their caregivers could benefit from an app that helps them better manage their health journey, specifically their health information. She discusses the gaps in our current healthcare system, the importance of data security, and how the Vaultt app works.
Audrey Bond
Audrey has been an entrepreneur for over 30 years and is passionate about helping patients and families dealing with chronic health problems. Her desire to help others came from a place of need as she was caring for her aging parents, who were both disabled, and she struggled to find a solution that worked. She has spoken on many panels on the topic of health tech and entrepreneurship and is currently mentoring three youth entrepreneurs, including her 18-year-old daughter. You can find the Vaultt app at the Apple Store: https://apps.apple.com/app/apple-store/id1481991621.
The CPFF receives a number of inquiries from international PF patients around the world who want to get access to Esbriet, where it has not yet been approved in their country – as patients want to know if it can be prescribed for them in Canada.
The University Health Network, through Toronto General Hospital, has an International Patient Service that can be accessed here https://www.uhn.ca/IHP/International_Patients
CPFF Support Group Resources
CPFF support and education groups play an important role in helping individuals living with IPF, their families and friends better understand the disease and their options to deal with its mental and physical impact. Learn about CPFF support groups and other organizations that can help you with your journey with pulmonary fibrosis.
Start your own CPFF support group. Get the CPFF Support Group Leader Toolkit.
Learn about patient groups and organizations that can help you with your journey with pulmonary fibrosis.
Canadian Thoracic Society (CTS)
Canadian Organization for Rare Disorders
National Organization for Rare Disorders (NORD)
Pulmonary Fibrosis Foundation (United States)
EURODIS (European Organisation for Rare Diseases)
Mesothelioma Guide (United States)
RareConnect.org (Partnership of EURODIS and NORD)
Papworth Hospital Interstitial Lung Disease service (United Kingdom)
Irish Lung Fibrosis Association (ILFA)
Longfibrose VZW (Belgium)
Lungenfibrose eV (Germany)
Ama Fuoridalbuio (Italy)
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI) (Spain)
Longfibrose NL (Netherlands)
CPFF support groups bring together people who are going through similar experiences to share their feelings, coping strategies, and more.
Caregiver Resources
Finding ways to cope and thrive as a care partner is vital for you and the health of your loved one. CPFF is committed to supporting you as a caregiver and shining the spotlight on your needs and the needs of PF patients. These resources have been aggregated to support family members, partners, friends, neighbours, and any other people who shoulder the physical and emotional support for people living with pulmonary fibrosis.
PF Caregiver Guide (English)
Guide du proche aidant (Français)
Often caregivers must use their personal finances and savings to pay for the needs of the person they care for. They may need to reduce their hours of work, or their family’s spending to do so. Some will need a loan or have to sell off other assets to afford care. There are several financial supports available for both caregivers and patients from government agencies and community organizations. You may also be eligible for caregiver benefits and leave. In addition, completing personal income tax on a yearly basis can increase the opportunity for potential credits or benefits from the Government of Canada.
- Check out the Canadian Federal Government’s Benefits Finder to find benefits and financial help with everyday expenses or personal tax deductions.
- Terminal Illness Disability Benefits: Individuals who have a terminal illness, like pulmonary fibrosis, can apply for the Terminal Illness Application for Disability Benefits under the Canada Pension Plan. Quebec residents can apply for a corresponding benefit from their province.
- Prescription Drug Coverage: Ontario Drug Benefit – Seniors Co-Payment Program (SCP) and Trillium Drug Program (TDP) applications.
- Federal government information on managing your finances (financial literacy programs, financial goal calculator, budget planner, frauds and scams, and income tax tips)
- Ontario Caregiver Organization: Financial Support (includes information about Tax Credits for Caregivers).
Additional Financial Support Resources (Ontario Caregiver Organization):
- Canada Revenue Agency List of Benefits and Tax Related Resources
- Service Canada List of Potential Financial Benefits for Caregivers
- Ontario & Federal Income Tax credits
- Credit Canada (links to credit counselling and building, debt consolidation or repayment, stopping collection calls, identifying financial scams, improving credit scores, and reading credit reports)
- Prosper Canada Resources: Benefits Way-Finder Tool, a Future Planning Tool, and some other financial support resources
Demands on pulmonary fibrosis (PF) caregivers are intense. Connecting with other PF caregivers who share similar experiences can be helpful. Meet virtually with other caregivers across Canada to share ideas and support one another. Register to secure your spot.
Carers Canada
A national coalition dedicated to increasing recognition and support for caregivers. Learn More
Caregivers Alberta
Providing resources, mental health support, and education. Learn More
Family Caregivers of British Columbia
Providing access to information, education, and support. Learn More
The Ontario Caregiver Organization
Being a point of access to information and support. Learn More
L’appui pour les proches aidants
Funding services for caregivers across Quebec. Learn More
Centre de recherche et d’expertise en gérontologie sociale
Bringing evidence-informed caregiver practices. Learn More
Caregivers Nova Scotia
Providing programs, services, and strong advocacy. Learn More
Eastern Health
Supporting caregivers in making informed choices. Learn More
Young Caregivers Association
Empowering young caregivers to achieve their full potential. Learn More
Caregiving Essentials
A free eight-week online course for primary caregivers to enhance their knowledge and skills. Caregivers will access information over the internet at your own pace, as well as meet others through an online discussion board. Caregiving Essentials Course
Topics:
- You and the Caregiver Role – Becoming a caregiver, includes legal & financial information
- Your Caregiver Toolbox: Health and Medical Fundamentals
- Navigating Complex Systems & Getting the Support You and Your Care Receiver Need
- Importance of Looking After You: take care of yourself so you can care for someone else
- Caregiver Resources
Ontario Caregiver Organization courses
- SCALE: Self-Care Awareness Learning & Empowerment (free 8-week course, covers stress, self compassion, overcoming sadness & guilt, anxiety & anger) SCALE Program – Ontario Caregiver Organization
Provincial Geriatrics Leadership Ontario (PGLO)
- Caregiving Strategies: free 8-week self paced on-line course to assist caregivers who are supporting seniors living with frailty. About the Caregiving Strategies Online Course – Provincial Geriatrics Leadership Ontario
I am a Caregiver starter kit: building your circle of support, reflecting on needs, caring for yourself, and caregiver programs and services (help-line, webinars, support groups, …). Ontario Caregiver Organization.
My Caregiver Action Plan: a 25-page booklet for you to keep all important information about your care recipient – available through the McMaster Caregiving Essentials Course.
Your Virtual Shoebox: an interactive tool designed to help you to keep track of important personal and family documents (insurance, policies, bank accounts, investments, mortgages, health records, wills, estate information). Canadian Life & Health Insurance Association Inc. CLHIA ACCAP: 2013.
The Caregiver’s Handbook by EduMed: explores typical caregiving challenges, and offers resources for organizing, prioritizing, and building a circle of support.
Palliative Care of Chronic Progressive Lung Disease (i.e., Interstitial Lung Disease), Clinical Medicine 2014, Vol 14 No. 1, pp 79-82.
- Video: ADVANCE CARE PLANNING – KARINE DIEDRICH
- What Matters to Me booklet (Workbook)
- Canadian Virtual Hospice has extensive resources including “Ask a Professional” and Discussion Forums
- Canadian Virtual Hospice Caregiver series: Includes modules on Diagnosis & Reactions; Communication & Conversations; Preparing for Caregiving at Home; Looking after You; About Medications; Hands-on Care; Recognizing Symptoms to Assess Comfort & Care; When Death is Near; and, After Death Has Occurred
- MyGrief.ca – Adults: grieving before the loss, understanding grief and moving through it
- KidsGrief.ca – Children and teens: talking about serious illness, dying and death, and providing support
- YouthGrief.ca – Anomie version for teens
- The American Conversation Project – Advance Care Planning: Offers resources to help make, discuss and document future healthcare wishes and decision in your advance care planning (American Institute for Healthcare Improvement)
- Speak-up, a comprehensive printable or fillable PDF Advance Care Planning National Workbook
Webinar
Digital Resources
How to Access Palliative Care in Canada
Educational Videos
Organizations That Can Help
Ontario community-based legal clinic for low-income seniors (covers topics related to consumer protection, elder abuse, health consent and advance care consent & planning, pension and incomes, powers of attorney, wills, retirement homes:
Resources related to Abuse & Family Violence, Debt & Consumer Rights, Housing Law (i.e., rent increases, maintenance and repairs), Health & Disability (i.e., Power of Attorney/ POA for property and POA for personal care, CPP disability benefits), Income Assistance (ODSP. disability benefits).
- Mental capacity/competence: Helping Aging Parents (free YouTube video)
- The How-To Health Guide: This site has resource to help with talking with doctor, asking for second opinion, asking about medications, medical insurance claims, and has a wealth of advocacy tools and resources across Canada (2016, 38 pages) .
- The Huddle Tool: A structured approach to organizing and presenting your request for the health team that helps to reduce your emotional state and distress level. Find a Course
The Safe Living Guide – A Guide to Home Safety for Seniors: This booklet contains outside and inside the home safety checklists, nutrition, physical activity, medication safety, useful aids, and home adaptations (Public Health Agency of Canada).
Tyze Support Network: A safe Canadian online tool that connects people around someone receiving care. Use it to privately communicate with family, friends and helpers about you or the person you care about; schedule appointments and events on a shared calendar; share files, photos, updates and more from anywhere, anytime. Tyze is HIPAA compliant which mean your data is secure and stored in Canada, so it is safe to add healthcare providers and medical records.
CareZone: This American app offers a journal that allows you to log and share information on your loved one, a calendar that comes in handy, and a contact section that helps you keep doctors, insurance companies, and much more all in one place.
Medication & other needs reminder Apps: Check out the Apple App Store & Google Play for options that meet you needs. There are: Apps to track your water/hydration levels, bowels; Apps that measure oxygen saturation, heart fitness, diet; and Apps to remind you to stand up and move/stretch, complete daily exercise, stretching, yoga or self calming/breathing routines…) i.e., Medisafe – a medication reminder App, and PainScale – designed for those who suffer from chronic pain, track pain levels, takes notes on possible causes, offers tips and insights to help your loved one become more comfortable.
Smart Speakers: Through phone access, Patient can easily make phone & video calls with voice activation, schedule tasks & set reminders/alarms, prepare & update lists, show digital photos, stream TV shows & videos, controls lights, thermostat etc. Check out PC Mag’s review of the best smart speakers. The Best Smart Speakers for 2023
Smart Watch Technology: Sensors can collect data from the PF patient’s smart watch for home monitoring or to share with your healthcare provider (heart rate, level of exercise, oxygen level, sleep score, activity level etc. Check out PC Mag’s review of the best smartwatches. The Best Smartwatches for 2023
Lotsa Helping Hands – Care Calendar Website: A calendar App that can be used to coordinated help for someone in need (meals, visits, appointments & transportation, deliveries).
Family Caregiver Alliance
- Taking Care of YOU: Self-Care for Family Caregivers
- Caregiving with Your Siblings (working through family dynamics)
- Caregiving and Ambiguous Loss
- The Emotional Side of Caregiving
- When Caregiving Ends
Pulmonary Fibrosis Foundation
Covid-19
Information about COVID-19 and various international, national, provincial and local statistics and policies are changing constantly. The following are some trustworthy resources for COVID-19 information and updates. For more local information, including municipal by-laws related to the virus, consult your local government official website.
Information about COVID-19 and various international, national, provincial and local statistics and policies are changing constantly. The following are some trustworthy online resources for COVID-19 information and updates, as well as the corresponding social media sites. For more local information, including municipal by-laws related to the virus, consult your local government official website. We’ve also added some links to mental health and caregiver websites that may be helpful during this time. Explore helpful links.
These Covid-19 educational videos from key experts will help you understand COVID-19 and its impact on lung health.
CANCOV Study: The Impact of COVID-19 on Lung Health CPFF
Understanding Vaccines 101: An Introduction to COVID-19 Vaccines
These short videos provide tips on how to manage your pulmonary fibrosis during COVID-19.
Coping with Isolation and Anxiety when Living with PF During COVID-19
CPFF Volunteer Resources
CPFF welcomes all volunteers interested in making a difference in the fight against PF.
Whatever the challenge, CPFF supporters have always risen to the occasion to increase awareness, hope, and funds for people living with pulmonary fibrosis. With this handy DIY Fundraising Kit, we hope to inspire and empower you to organize your own Community Walk, Roll, Run. Get the CPFF DIY Fundraising Kit.
Submit your application to volunteer with CPFF and help us make a difference for people living with PF.
CPFF Reports
CPFF is dedicated to understanding and supporting the changing needs of people living with pulmonary fibrosis. These informative reports provide insights into the disease and the needs of patients and caregivers.
People living with pulmonary fibrosis (PF) and their family members often find it difficult to get clear, and consistent information about this disease. The purpose of this guide is to help provide an easy-to-understand, accurate overview of pulmonary fibrosis for patients and their caregivers. Read the Pulmonary Fibrosis Patient Guide to learn about pulmonary fibrosis signs, symptoms and causes. Plus, get insights on PF diagnosis, treatment, and disease management.
Please remember that this information is a brief overview and is for educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your health care providers with any questions regarding specific medical conditions.
The CPFF Patient Charter is a document which sets out a number of patient rights in an effort
to create a national standard of care. The Charter makes recommendations to provincial
governments, institutions and health care organizations to improve patients’ overall
quality of life, while simultaneously supporting efforts for targeted research to develop
better long-term treatments, and to ultimately find a cure.
Read the CPFF Patient Charter: CPFF PATIENT CHARTER / LA CHARTE DES CANADIENS ATTEINTS DE FPI
CPFF asked the PF community to complete a survey about their experiences living with pulmonary fibrosis, its impact on their lives, and what they needed for the future. Many people living with PF and their caregivers from across the country responded to our call. Read the reports:
Breath of Hope Report 2024 / Un souffle d’espoir 2024
Breathless for Change Report 2022 / À bout de souffle pour du changement 2022
Breathless for Change Report Highlights 2022 / À bout de souffle pour du changement faits saillants 2022
Breathless for Change Report 2020 / À bout de souffle pour du changement 2020
CPFF works tirelessly to support patients and caregivers, educate the public and medical community, fund research, and advocate for equitable treatment access. We are grateful for the continued support of our dedicated community who enable us to shine a light on pulmonary fibrosis and ignite hope for people living with this devastating disease. Together, we have created amazing impact supporting the four pillars that guide our organization.
Impact Video 2024-2025 / Vidéo d’impact 2024-2025
Impact Report Highlights 2022 -2023 / Rapport d’impact faits saillants
The Burden of IPF in Canada Report reveals major gaps and disparities in care for Canadians living with idiopathic pulmonary fibrosis (IPF). Developed in collaboration with CPFF and Hoffmann-La Roche Limited, with input and guidance from a committee of IPF experts, the report provides credible, evidence-based information on the prevalence, economic impact, diagnosis and treatment of IPF. It uncovers the issues facing patients, their caregivers, and the health care professionals who treat them. Importantly, the report provides workable solutions to substantially alleviate the considerable burdens associated with the condition.
Read the report: BURDEN OF IPF IN CANADA REPORT / LE FARDEAU DE LA FIBROSE PULMONAIRE IDIOPATHIQUE AU CANADA
CPFF Newsletters
Read the CPFF newsletter for the latest news, research updates, patient and caregiver support, plus more.
Provincial Resources
Find resources in your province for pulmonary fibrosis medical care and support.
Benefits Finder Tool
Find benefits and financial help with everyday expenses or personal tax deductions using this Government of Canada Benefits Finder Tool.
Terminal Illness Disability Benefits
Individuals who have a terminal illness, like pulmonary fibrosis, can apply for the Terminal Illness Application for Disability Benefits under the Canada Pension Plan. Quebec residents can apply for a corresponding benefit from their province.
Terminal Illness Medical Attestation for a Disability Benefits Application under the Canada Pension Plan (excludes Quebec)
Attestation médicale de maladie en phase terminale pour une demande de prestations d’invalidité en vertu du Régime de pensions du Canada (exclus le Québec)
Disability Benefits in the Case of Terminal Illness Under a Public-Sector Pension Plan (Quebec only)
Prestation de maladie en phase terminale d’un régime de retraite du secteur public (Quebec seulement)
Drug Benefits
Prescription Drug Coverage: Ontario Drug Benefit – Seniors Co-Payment Program (SCP) and Trillium Drug Program (TDP) applications.
There is no doubt that your family doctor (or nurse practitioner) is the gateway to accessing the health care system in your province or territory. Unfortunately, millions of Canadians do not have a primary care physician. CPFF has gathered some links that may help you to find a family physician, or a walk-in clinic, in your area.
General info
Health Insider: How to Find a Canadian Family Physician
Skip the Waiting Room is one way to find walk- in clinics in your area. They have up-to-date schedules, contact information, and let you book appointments online.
Provincial Resources
British Columbia
BC College of Family Physicians: Find a Family Doctor
Alberta
Alberta Health Services: Find a Doctor
Alberta Health Services: Walk-in Clinics
Saskatchewan
College of Physicians and Surgeons of Saskatchewan: Finding a Doctor
Manitoba
Manitoba Government: Family Doctor Finder
Winnipeg Regional Health Authority: Walk-in Clinics
Ontario
Ontario Government: Find a Family Doctor or Nurse Practitioner
Ontario Government: Walk-in Clinics
Quebec
Québec: Registering with a Family Doctor
Québec : Inscription auprès d’un médecin de famille
Québec: Knowing clinics that offer same-day or in the following days medical appointments
New Brunswick
New Brunswick Medical Society: Finding a Family Physician
https://www2.gnb.ca/content/gnb/en/corporate/promo/accessing-healthcare/be-matched.html
New Brunswick: Be matched with a family doctor or nurse practitioner
Newfoundland
Nova Scotia
Nova Scotia: Find a Family Physician or Other Primary Care Provider
Prince Edward Island
Prince Edward Island: Find a Family Doctor or Nurse Practitioner
Prince Edward Island: Walk-in Clinics
Northwest Territories
Northwest Territories Health and Social Services Authority: Regional Portals
Yukon
Yukon: Find a Primary Care Provider
Nunavut
Nunavut Community Health Centres
Find a respirologist in Canada who specializes in interstitial lung disease using this comprehensive list which is organized by province, and includes links to each respirologist.
British Columbia – Pirfenidone – Nintedanib
Alberta – Pirfenidone – Nintedanib
Manitoba – Pirfenidone & Nintedanib (See page 81)
Saskatchewan – Pirfenidone & Nintadanib (See pages 62-69)
Ontario – Pirfenidone & Nintedanib (See pages 374-376)
Quebec – Pirfenidone & Ninedanib – English (See pages 117 & 129) / Français (Voir pages 125 et 137)
New Brunswick – Pirfenidone & Ninedanib – English (See pages 71 & 83) – Français (Voir pages 365 & 378)
Newfoundland & Labrador – Pirfenidone & Nintedanib (See pages 209 & 237)
Nova Scotia – Pirfenidone & Nintedanib (See pages 89 & 104)
Prince Edward Island – Pirfenidone & Nintedanib (See pages 430 & 438)
Yukon – Pirfenidone & Nintedanib (See pages 269 & 285)
Northwest Territories – Extended Health Benefits for Specified Disease Conditions Program (Alberta Blue Cross)
Non-Insured Health Benefits (NIHB) – Pirfenidone & Nintedanib
Medication Information Handouts
Get provincial resources for lung transplants in Canada.
The Alberta general election will be held on May 29, 2023. The campaign period commenced on May 1, 2023, and will last 28 days. Download the 2023 Alberta Election Advocacy Toolkit as a resource to help you communicate to all parties and candidates an overview of CPFF key messages and recommendations for good public policy as it relates to pulmonary fibrosis.
Clinical Trials
Find resources about clinical trials.
CPFF: Clinical trials for new PF treatments in 2024 and beyond
Government of Canada: Clinical Trials and Drug Safety In Canada
Health Canada: Clinical Trials and Health Safety: download the pdf
Find a Clinical Trial in Canada
The Canadian Pulmonary Fibrosis Foundation (CPFF) is committed to providing valuable resources to our community. Click here to find a list of the most recent clinical trials evaluating new pulmonary fibrosis research in Canada.
Clinical Trials Videos
Learn about the different types of clinical trials, why we need them, their key aspects, recent innovations, and how to find them. Plus get insights from research professionals on current clinical trials.
Pulmonary Fibrosis Organization has a Clinical Trial Finder for pulmonary fibrosis related to conditions https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/clinical-trials-education-center
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world
The Center for Information and Study on Clinical Research Participation (CISCRP)
Informing patients and families about clinical research: The Center for Information and Study on Clinical Research Participation’s (CISCRP) core mission is to provide accessible, relevant, useful, high quality educational resources, programs, and services that increase awareness and understanding of the clinical research process; recognize and appreciate the unprecedented gift of participation in clinical trials; enhance and enrich the participation experience for patients and their families; and promote engagement and partnership between clinical research professionals, patients, and the public. https://www.ciscrp.org/
The Canadian Pulmonary Fibrosis Foundation (CPFF) is committed to providing valuable resources to our community. Click here to find a list of the most recent clinical trials evaluating new pulmonary fibrosis research in Canada.
The PF Foundation clinical trials education centre from the United States also offers a clinical trial finder and more
FIBRONEER-IPF: A Phase 3 Clinical Trial – Dr. Donald Zoz
This presentation, led by Dr. Donald Zoz MD, senior clinical program leader at Boehringer Ingelheim, provides some insight into FIBRONEER-IPF, a Phase 3 Clinical Trial. The goal of FIBRONEER-IPF Phase 3 Clinical Trial is to evaluate the efficacy, safety, and tolerability of the compound BI 1015550, an investigational therapy for people with idiopathic pulmonary fibrosis (IPF).