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: Roberto Zapata
phone: 905-294-7645
This support group meets virtually and weekly on Tuesdays at 2PM ET. To view and access future sessions, please consult our events calendar.
CAREGIVERS
National Virtual Caregiver Pulmonary Fibrosis Support Group
Contact: Roberto Zapata
phone: 905-294-7645
This support group meets virtually and bi-weekly on Mondays at 7PM ET. To view and access future sessions, please consult our events calendar.
Please note that you must register to each session you wish to attend.
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
Co-leader: Martha Hardy
Please contact [email protected] to be connected with these support group leaders.
Until we can meet again face-to-face please contact Holly or Martha for details on Zoom meetings.
ALBERTA
CALGARY
Calgary Pulmonary Fibrosis Support Group
Contact: Kirk Mathison
Please contact [email protected] to be connected with this support group leader.
ILD Nurse Clinician, ILD Clinic, South | health Campus
Zoom meetings 1st Tuesday of each month 6.30-8.30pm
Zoom “chat” meetings 3rd Tuesday of each month 6.30-8.30pm
Contact Kirk to register your email address for these meetings.
EDMONTON
Edmonton Pulmonary Fibrosis Support Group
Contact: Karen Fox
Please contact [email protected] to be connected with this support group leader.
Zoom meeting coffee/chat on 1st Wednesday of each month at 11 am
Zoom meeting 3rd Wednesday of each month 7-8.30 pm
Send an email, introduce yourself and she will send you an invite to the Zoom meeting.
SASKATCHEWAN
SASKATOON
Saskatoon Pulmonary Fibrosis Support Group
Contact: Peggy McKee RN, BSN, ILD Nurse Clinician, Chronic Disease Management
Please contact [email protected] to be connected with this support group leader.
Royal University Hospital 103 Hospital Drive, Saskatoon S7N 0W8
Zoom meeting 2nd Tuesday of each month 7pm – 8.30 pm
*No meetings in July and August
Please contact Peggy to register your email address for the Zoom meetings.
MANITOBA
WINNIPEG
Winnipeg Pulmonary Fibrosis Support Group
Contact: Debbie Homik, RRT
Secondary: Amy Webb
Please contact [email protected] to be connected with this support group leader.
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
Please contact [email protected] to be connected with this support group leader.
Please RSVP by contacting Tim Brady either by phone or email if you are interested in attending.
Until we can meet again face-to-face, please contact Tim to register your email address for the Zoom meetings and for more information.
HAMILTON
Hamilton Pulmonary Fibrosis Support Group
Contact: Tim Brady
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Tim to register your email address for Zoom meetings.
NIAGARA-ON-THE-LAKE
Niagara Pulmonary Fibrosis Support Group
A support group for those diagnosed with Idiopathic Pulmonary Fibrosis (IPF). 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
Dan Meloche
Please contact [email protected] to be connected with these support group leaders.
Until we can meet again face-to-face please contact Jack or Dan for information on Zoom meetings.
OTTAWA
Ottawa Pulmonary Fibrosis Support Group
Contact: Roberto Zapata [email protected]
Until we can meet again face-to-face please contact Roberto to register your email address for Zoom meetings and for more information.
OWEN SOUND
Owen Sound Pulmonary Fibrosis Support Group
Contact: Tim Brady
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Tim to register your email address for Zoom meetings and for more information.
The meetings will be held on the third Thursday of each month. The first meeting is this month Nov 17th at 7:00 P.M.
SARNIA
Sarnia Pulmonary Fibrosis Support Group
Contact: Tim Brady
Please contact [email protected] to be connected with this support group leader.
Until we can meet again face-to-face please contact Tim to register your email address for Zoom meetings and for more information.
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:
YORK REGION SOUTH
Virtual Support Group during COVID-19
Contact: Sharon Lee
Please RSVP to [email protected],
Secondary: Mandy Sivananthan
Group meets 4th Wednesday of every month.
TORONTO
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.
NEW BRUNSWICK
MONCTON
Moncton Pulmonary Fibrosis Support Group
Contact: Amanda Babineau
Please contact [email protected] to be connected with this support group leader.
This is a bilingual support group meeting of patients and caregivers.
Il s’agit d’une réunion de groupe de soutien bilingue de patients et de soignants.
Until we can meet again in person please contact Amanda to register for Zoom meetings
Wednesday, August 10th at 10:30 AM
Wednesday, September 7th at 10:30 AM
Wednesday, October 5th at 10:30 AM
Wednesday, November 2nd at 10:30 AM
Wednesday, November 30th at 10:30 AM
Click here to register to the July 13th to November 30th meetings.
NEWFOUNDLAND
ST. JOHN’S
St. John’s Pulmonary Fibrosis Support Group
Contact: Dr. Gokul Vidyasankar [email protected]
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: Roberto Zapata [email protected]
Until we can meet again face-to-face please contact Roberto to register your email address and for information on Zoom meetings.
Meetings are on 3rd Wed of every month.
SYDNEY
Sydney Pulmonary Fibrosis Support Group
Contact: Pat Popwell 902-565-9068 [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]