Create a Support Group

Creating your own Support Group

Support groups provide an opportunity to meet other people who share similar experiences. Most often groups provide support and advice on how to deal with common problems. The goal of a support group is to create a warm non-judgmental atmosphere where members can talk about life’s challenges without embarrassment as well as give support and encouragement to each other. A support group is a place for people to come together to share coping strategies, discuss feelings and make new friends.

If your local community does not offer a support group for those with pulmonary fibrosis, consider starting one! Here is a short guide to help you get going:

Place to Meet - Restaurant, public library, community center in your town, your church, synagogue, hospital or medical center, public school, your home, etc. Keep in mind that the meeting place should be accessible to as many people as possible

How often and How long? - Monthly, bi-monthly, once a quarter . . . it’s you and your group’s choice.

Speakers - You can invite speakers (respiratory therapists, oxygen representatives, nutritional experts, doctors, etc.) to talk at your meeting.

Advertise Your Group - Post your group’s information on the Pulmonary Fibrosis Foundation's website. Some local newspapers have space to advertise support groups. Contact local respiratory therapists to let them know about your group as well. Make up flyers to pass out to pulmonologists to distribute to their pulmonary fibrosis patients.

First Meeting - When you have your list of potential attendees, contact them confirming the meeting time and place. Keep the first meeting small – 2-3 people at first is fine. Allow 1-2 hours for this meeting and then you can let the group decide the time, length and place of future meetings. Introduce yourself and share your story; invite others to share their stories, but no one should be forced to talk before they feel comfortable. All information should be kept confidential within the group. Ask for volunteers to help plan/run future meetings and assign specific roles.

If you are interested in starting your own group, we would love to help you do it! If you would like to discuss establishing a group in your area, or if you have any questions, please contact Dolly Kervitsky, Vice President of Patient Relations, at 888.733.6741 or dkervitsky@pulmonaryfibrosis.org.