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.

About Education and Support Groups

A smiling 90 year old man using a laptop computer.
”I am grateful for the group and appreciate the support other members can provide”. L.M.

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.

Find a PF Support Group in Your Community

BRITISH COLUMBIA

Vancouver Pulmonary Fibrosis Support Group

Contact: Fran Schooley

FSchooley@providencehealth.bc.ca

phone:  604-806-8818 press 2

Until we can meet again face-to-face please contact Fran for information on Zoom meetings.

Vancouver Island Pulmonary Fibrosis Support Group

Meetings are monthly
First Monday of every month

Co-leader: Dr. Holly Smith

Email address: hollyjeans@shaw.ca

Phone: 250-245-3100

Co-leader: Martha Hardy

Email address: mjhardy@shaw.ca

Phone:  250-754-2552

Until we can meet again face-to-face please contact Holly or Martha for details on Zoom meetings.

ALBERTA

Calgary Pulmonary Fibrosis Support Group

Contact: Kirk Mathison  403-956-2813

Kirk.mathison@albertaHealthservices.ca

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 Pulmonary Fibrosis Support Group

Contact: Karen Fox  780-904-8222   pfgroup@ablung.ca

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 Pulmonary Fibrosis Support Group

Contact: Peggy McKee RN, BSN, ILD Nurse Clinician, Chronic Disease Management
306-716-1615   peggy.mckee@saskhealthauthority.ca

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 Pulmonary Fibrosis Support Group

Contact:  Debbie Homik, RRT 

204-955-8100  winnipeg.ipf@gmail.com

Secondary: Amy Webb

Zoom meetings:  1st Tuesday of each month, alternate afternoon & evening. 

Please contact Debbie so she can send an invite and give you further information.

ONTARIO

Blenheim Pulmonary Fibrosis Support Group

Contact: Barbara Holden 519-401-6850   barbaraholden50@gmail.com

Until we can meet again face-to-face please contact Barbara to register your email address for the  Zoom meetings.

Kingston Pulmonary Fibrosis Support Group

Contact: Lanny Klassen, email IPF.Kingston@gmail.com
Group leader: Lyn McCarthy respipf11@gmail.com

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 Pulmonary Fibrosis Support Group

Contact: Tim Brady 519-652-7254 bradyt215@gmail.com

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 Pulmonary Fibrosis Support Group

Contact: Tim Brady bradyt215@gmail.com

Until we can meet again face-to-face please contact Tim to register your email address for Zoom meetings.

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

Contact:

Jack Rapattoni 905-708-2471  gianni4244@gmail.com

Dan Meloche  905-227-2214  danmeloche@hotmail.ca

Until we can meet again face-to-face please contact Jack or Dan for information on Zoom meetings.

Ottawa Pulmonary Fibrosis Support Group

Contact: Roberto Zapata   info@cpff.ca

Until we can meet again face-to-face please contact Roberto to register your email address for Zoom meetings and for more information.

Sarnia Pulmonary Fibrosis Support Group

Contact: Tim Brady 519-652-7254 bradyt1215@gmail.com

Until we can meet again face-to-face please contact Tim to register your email address for Zoom meetings and for more information.

Virtual Support Group during COVID-19

Contact: Sharon Lee
Please RSVP to info@cpff.ca,

Secondary:  mandy.ettinger@uhn.ca

Group meets 4th Wednesday of every month.

Toronto Pulmonary Fibrosis Support Group

Contact: Mandy Sivananthan, NP, MN, BScN
mandy.ettinger@uhn.ca

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 Pulmonary Fibrosis Support Group

Contact: Amanda Babineau  

506-869-283   amanda.babineau@vitalitenb.ca

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

Download the flyer here

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 Pulmonary Fibrosis Support Group

Contact: Dr. Gokul Vidyasankar    cpffnl@gmail.com

Please email Gokul for more information.

PRINCE EDWARD ISLAND

Stratford Pulmonary Fibrosis Support Group

Contact: Rosemary Matthews    

902-626-7014     arsenault45@hotmail.com

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 Pulmonary Fibrosis Support Group

Contact: Roberto Zapata  info@cpff.ca

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 Pulmonary Fibrosis Support Group

Contact: Pat Popwell  902-565-9068  ppopwell54@gmail.com
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.

How to Start a Support Group

CPFF Founder Robert Davidson (1947-2019) speaks about the importance of support groups and 
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 info@cpff.ca.

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
Checklist and pen
IPF Toolkit

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.

During a support group session, a woman comforts a man and puts a hand on his shoulder.

How to Use Your CPFF Support Group Leader Toolkit

You will find the following resources to help you in the organization, promotion and operation of your own education and support program:

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 info@cpff.ca

Group Leader Module

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.

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.

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 info@cpff.ca