Welcome

This presentation is for the group leader.

This guide will assist you in the planning, sharing and executing of an IPF patient support group in your community, either in person or online. Being a group leader is an important role which will help organize the actions necessary to begin, sustain and motivate a patient support group.

This toolkit can be used in many different ways and can be tailored to your needs. This Leader Guide outlines a few suggestions on how you can use these resources. You may also use them in other ways as you see fit.

It is very important that all people with IPF have a good support system. Support groups may include family members or close friends. Information and support groups can also be known as peer support groups or self-­‐help groups. They are common in the patient advocacy of many diseases.

Groups can contain as few as three people discussing their disease or can be as large as a patient forum with more than one hundred participants. The number of people in your support group is up to you. Being diagnosed with IPF is a very diffcult experience. An effective group leader needs to be willing, committed and enthusiastic.

With relatively few patients diagnosed with IPF, it may be a challenge to find members and/or have members attend meetings. You may possibly meet others with IPF at your respirologist’s office, hospital or rehabilitation centre. No two people will travel the same journey with this disease. Many patients are interested in how other people cope after being diagnosed, the steps they take, the research they did, the possible trial treatment they are on, etc.