Support Groups
CPFF support groups bring together people who are going through similar experiences to share their feelings, coping strategies, and more. Feelings of isolation are common among people living with PF. Family and friends may not understand the impact of the disease as you may not “look sick”. Support groups migrated online during the pandemic. Contact a group to find out if they are meeting virtually.
A support group is a gathering of people affected by pulmonary fibrosis, brought together because of common experiences or challenges living with the disease. Typically, anyone affected by any form of pulmonary fibrosis can become a member of this type of group.
There are different types of support and education groups, some casual while other include various activities and guest speakers. Although each group operates in a unique way, all groups meet regularly to share experiences and information. You will need to decide where, when, and how frequently your group will meet.
National
PATIENTS
National Virtual Patient Pulmonary Fibrosis Support Group
Contact: Trish Tonelli
This support group meets virtually on the first and third Tuesdays of the month 3PM ET (Toronto Time).
Please note that you must register to each session you wish to attend.
We welcome you to also join the Canadians Living with Pulmonary Fibrosis Facebook support group.
CAREGIVERS
National Virtual Caregiver Pulmonary Fibrosis Support Group
Contact: Trish Tonelli
This support group meets virtually and bi-weekly on Mondays at 7PM ET.
Please note that you must register to each session you wish to attend.
We welcome you to also join the Canadians Living with Pulmonary Fibrosis Facebook support group.
FRANÇAIS
Groupe de soutien national pour la fibrose pulmonaire
Contact: David Gourde
Ce groupe de soutien se réunit virtuellement une fois par mois à 19h00 HE (Heure de Montréal). Pour voir et accéder aux sessions futures, veuillez regarder ci-dessous.
Veuillez noter que vous devez vous inscrire à chaque session que vous voulez assister.
Nous vous invitons également à joindre le groupe de soutien Facebook des canadiens vivants avec la fibrose pulmonaire.
Canadians Living with Pulmonary Fibrosis
We welcome you to join the Canadians Living with Pulmonary Fibrosis Facebook support group.
This is a bilingual support group, though the vast majority of the communication takes place in English.
If you have any questions about this group, please reach out to [email protected].
Canadiens vivant avec la fibrose pulmonaire
Nous vous invitons à joindre le groupe de soutien Facebook des canadiens vivants avec la fibrose pulmonaire.
Ce groupe de soutien est uniquement en français.
Si vous avez des questions à propos de ce groupe, veuillez nous contacter à [email protected].
BRITISH COLUMBIA
VANCOUVER
Vancouver Pulmonary Fibrosis Support Group
Contact: Fran Schooley
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Fran for information on Zoom meetings.
VANCOUVER ISLAND
Vancouver Island Pulmonary Fibrosis Support Group
Meetings are monthly
First Monday of every month
Co-leader: Dr. Holly Smith – Mill Bay to Parksville/Qualicum
Email address: [email protected]
Co-leader: Ken Gordon – Saanich Peninsula
Email address: [email protected]
Co-leader: Gloria Cole – Northern Vancouver Island
Email address: [email protected]
Co-leader: Laura Chambers – Victoria
Email address: [email protected]
Until we can meet again face-to-face please contact any of the co-leaders for details on Zoom meetings.
If you have any issues reaching any of the co-leaders, you may contact [email protected] for assistance.
ALBERTA
CALGARY
Calgary Pulmonary Fibrosis Support Group
Contact: Kirk Mathison, RN
ILD Nurse Clinician
ILD Clinic, South Health Campus
Calgary, AB
[email protected]
403-956-2813
Zoom meetings 1st Tuesday of each month.
Contact Kirk for more information or to register your email address for these meetings.
Calgary Pulmonary Fibrosis Chat Meetings
This is an informal Zoom meeting to socialize with others dealing with Pulmonary Fibrosis. This meeting is open to all those in Calgary and surrounding communities, whether you are living with PF yourself or care about someone who is. It is an opportunity to share stories, make friends, exchange helpful tips and to give and receive support as you manage life with PF.
Contact: Kathy Hudon
[email protected]
These meetings are held online over Zoom the 3rd Tuesday of each month, year-round.
Please contact Kathy for more information and to be added to the email list to receive the monthly invitations and meeting links.
PROVINCIAL
Alberta Provincial Pulmonary Fibrosis Support Group
Contact: Jamie Happy, Health Promotion Coordinator for Alberta Lung
Please contact [email protected] to be connected with this support group leader.
Zoom meeting coffee/chat on 1st Wednesday of each month at 11AM-12PM.
Zoom meeting 3rd Tuesday of each month 7-8 PM.
Send an email, introduce yourself and she will send you an invite to the Zoom meeting.
SASKATCHEWAN
SASKATOON
Saskatoon Pulmonary Fibrosis Support Group
Contacts:
Shane Vandenameele, RN, BSN, ILD Nurse Clinician, Chronic Disease Management
Jaimie Peters, RN, MN, CRE of Lung Sask
Ad-hoc Zoom meetings, visit Lung Sask Pulmonary Fibrosis Support Group website for more information.
Please contact Lung Sask for more information or to register your email address for the Zoom meetings.
MANITOBA
WINNIPEG
Winnipeg Pulmonary Fibrosis Support Group
Contact: Debbie Homik, RRT
Secondary: Amy Webb
Email: [email protected]
Please contact Debbie and Amy for any further information.
ONTARIO
BLENHEIM
Blenheim Pulmonary Fibrosis Support Group
Contact: Barbara Holden
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Barbara to register your email address for the Zoom meetings.
KINGSTON
Kingston Pulmonary Fibrosis Support Group
Contact: Lanny Klassen
Group leader: Lyn McCarthy
Please contact [email protected] to be connected with these support group leaders.
Until we can meet again face-to-face, please contact Lanny or Lyn to register your email address for Zoom meetings.
Dates vary but typically Fridays.
LONDON
London Pulmonary Fibrosis Support Group
Contact: Tim Brady
Phone: 519-652-7254
Email: [email protected]
Please RSVP by contacting Tim Brady either by phone or email if you are interested in attending.
Please note that, for the time being, the London and Sarnia support groups are meeting jointly via Zoom.
Zoom meetings take place on the 1st and 3rd Mondays of every month at 7PM ET with the exception of June, July and August which will only have a meeting on the 3rd Monday of the month.
Please reach out to Tim Brady if you have any questions.
If you have any issues reaching this support group leader, you may contact [email protected] for assistance.
HAMILTON
Hamilton Pulmonary Fibrosis Support Group
Contact: Tim Brady
Phone: 519-652-7254
Email: [email protected]
Please RSVP by contacting Tim Brady either by phone or email if you are interested in attending.
Zoom meetings take place on the 2nd and 4th Tuesday of every month at 7PM ET with the exception of June, July, August which will only have a meeting on the 4th Tuesday of the month.
Please reach out to Tim Brady if you have any questions.
If you have any issues reaching this support group leader, you may contact [email protected] for assistance.
NIAGARA-ON-THE-LAKE
Niagara Pulmonary Fibrosis Support Group
A support group for those diagnosed with Pulmonary Fibrosis (PF). Adults and their partners/family members of all afflicted with the disease are welcome, there is no charge to participate.
Program Offerings:
Advocacy, education and moral support in a non-medical environment
Contacts:
Jack Rapattoni
Mary Lou Urquhart
Sheila Volcher
Please contact them for more information about this group. Their emails can be found on the image below.
OTTAWA
Ottawa Pulmonary Fibrosis Support Group
Contact: Bruce Lonergan
Email: [email protected]
The Ottawa support group for the Canadian Pulmonary Fibrosis Foundation recently opened its virtual doors for those interested in attending. Our mission, aligning with the national organization, is to promote awareness and support the cause, but above all, our group is here for you! Whether you are a PF patient, caregiver, or involved in any other way, we invite you to share your story and experiences, exchange ideas or be a fly on the wall and listen and learn. Whatever it takes to ease your pain or lift your burden, we’re here for you.
We look forward to meeting you virtually and maybe in person!
Upcoming meetings:
Zoom meetings take place on the 2nd Wednesday of the every month at 7PM ET. Click each date you wish to attend to register
- Jan 8, 2025 07:00 PM
- Feb 12, 2025 07:00 PM
- Mar 12, 2025 07:00 PM
- April 9, 2025 07:00 PM
- May 14, 2025 07:00 PM
- June 11, 2025 07:00 PM
- July 9, 2025 07:00 PM
- Aug 13, 2025 07:00 PM
- Sept 10, 2025 07:00 PM
- Oct 8, 2025 07:00 PM
- Nov 12, 2025 07:00 PM
- Dec 10, 2025 07:00 PM
Please reach out to Bruce Lonergan if you have any questions.
If you have any issues reaching this support group leader, you may contact [email protected] for assistance.
SARNIA
Sarnia Pulmonary Fibrosis Support Group
Contact: Tim Brady
Phone: 519-652-7254
Email: [email protected]
Please RSVP by contacting Tim Brady either by phone or email if you are interested in attending.
Please note that, for the time being, the London and Sarnia support groups are meeting jointly via Zoom.
Zoom meetings take place on the 1st and 3rd Mondays of every month at 7PM ET with the exception of June, July and August which will only meet on the 3rd Monday of the month.
Please reach out to Tim Brady if you have any questions.
If you have any issues reaching this support group leader, you may contact [email protected] for assistance.
WINDSOR
Windsor Pulmonary Fibrosis Support Group
Contact: Nellie Bordignon
Please contact [email protected] to be connected with this support group leader.
This group meets in-person. For more information or to register, please visit their website:
TORONTO / YORK REGION SOUTH
Toronto Pulmonary Fibrosis Support Group
Contact: Mandy Sivananthan, NP, MN, BScN
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Mandy for information and to register your email address for Zoom meetings.
Please note that this support group only meets ad-hoc, via Zoom. Should you be in need of regular support, please refer to our National support groups.
NEWFOUNDLAND
ST. JOHN’S
St. John’s Pulmonary Fibrosis Support Group
Contact: Dr. Gokul Vidyasankar
Please contact [email protected] to be connected with this support group leader.
Please email Gokul for more information.
PRINCE EDWARD ISLAND
STRATFORD
Stratford Pulmonary Fibrosis Support Group
Contact: Rosemary Matthews
Please contact [email protected] to be connected with this support group leader.
This is strictly a support group meeting of patients and caregivers.
The group is meeting on the 2nd Sunday of the month.
They can also be contacted on the PEI Pulmonary Fibrosis Facebook page.
Until we can meet again face-to-face please contact Rosemary for more information and to register your email address for Zoom meetings.
NOVA SCOTIA
HALIFAX
Halifax Pulmonary Fibrosis Support Group
Contact: Brenda Reynolds
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Brenda to register your email address and for information on Zoom meetings.
Meetings are on 4th Wednesday of every month.
SYDNEY
Sydney Pulmonary Fibrosis Support Group
Contact: Pat Popwell 902-565-9068
Email: [email protected]
135 Wilson Road
Cape Breton NS B1E 1L1
Zoom meetings last Thursday of each month
Time: 7:00 p.m. to 8:30 p.m.
Please contact Pat to register your email address for the Zoom meetings.
describes the CPFF Patient Support Toolkit and how to get started with your own group.
Interested in starting your own support group? CPFF can help. We have created a toolkit to help you every step of the way. Developed by CPFF with support from our medical advisory committee and a grant from InterMune Canada Inc. (acquired by Roche Canada), this handy kit will assist you in planning, sharing and executing a PF patient support group in your community, either in person or online. Please contact Sharon Lee for guidance at [email protected].
Start Your Own Education and Support Group in 8 Simple Steps:
- Prepare by reading the CPFF Support Group Leader Toolkit
- Set a re-occurring time and date to meet
- Get permission to use a location
- Promote the event
- Confirm participant attendance
- Choose a presentation from the CPFF Support Group Leader Toolkit or use the presentation template to create your own
- Arrange a light snack and/or refreshments
- Have registration forms ready
Using the CPFF Support Group Leader Toolkit
The CPFF Support Group Leader Toolkit can be used in many different ways and can be tailored to your needs.
This leader guide outlines a few suggestions about how you can use these resources. You may also use them in other ways as you see fit.
Types of Meeting Formats
There are two basic patient meeting formats. Which meeting format you would like to implement is up to you.
Re-occurring Support Group
A support group is a smaller group of patients and caregivers meeting together to discuss their disease and share.
Patient Forums
A forum is a larger meeting where experts present information to the group about their disease, with time left at the end for questions.
You will find the following resources to help you in the organization, promotion and operation of your own education and support program:
One (1) Group Leader Presentation
A complete guide of how to set up your own IPF education and support If you have additional questions or would like to review the presentation with a certified trainer, please email [email protected]
Meeting Modules
Six (6) topic-specific meeting presentations to guide you through your first six meetings. These presentations include information on different topics related to IPF as well as speaking notes and group discussion questions.
- Customize Your Own Module (Blank Template) – Once you have completed presentations one (1) to six (6), this template will help you create group presentations on the topics. When creating your presentations, make sure you use information from a trusted source.
One (1) Recruitment Poster
You can post these in a respirologist’s office, pulmonary rehabilitation centre, or local community centre to help you recruit others affected by PF. The poster leaves space to include the group time, date, location, and your contact information.
One (1) Participant Registration Form
This will help members get involved with the pulmonary fibrosis community and learn more about upcoming events, PF news, and advocacy. This network will also help the CPFF refer newly diagnosed patients to existing support groups and connect group leaders.
If you have any questions about the toolkit please email [email protected]