Forming a support group varies tremendously, but its role is universal. A positively functioning support group will provide its members with support, encouragement, and useful information, in addition to being a social outlet. These are not mutually exclusive aspects, but rather a matrix of roles that ultimately foster a sense of well-being for its members. How a group originates has much to do with the type of group it becomes. Some individuals starting a group will create one that meets their own needs. Some individuals try to address the needs of others based on what they imagine would have helped them earlier on with their own journey.

Support groups established through a facility such as a hospital or rehabilitation clinic may try to identify needs by collecting information from their patients and assigning a staff member to facilitate the group – at least in the beginning.

Whatever form the start-up support group may take, it will likely evolve over time, especially as members and leaders come and go. When a support group is no longer meeting members’ needs, they can choose to take on leadership roles to redirect the group, leave the group, or they may decide to create a new one with a different goal.

There are three basic types of support groups:

• Groups meeting face-to-face
• Groups meeting online using virtual platforms
• Groups meeting in a hybrid setting

New Groups Versus Reforming Existing Groups

Some groups will be totally new. Others may be a reformation or restructuring of a group that existed in the past but has disbanded. If you are resurrecting a group, these are few recommended considerations:

• Why did the original group dissolve (e.g., low attendance, ineffective meetings, etc.)?
• What type of structure did the group have, where did they meet, and how often did they meet?
• What did the leadership do or not do to structure the group?
• Are any previous leaders or members interested in seeing the group reform?

Steps to Launching Your Support Group

1. Find the Right People

Most support groups are formed by one or two dedicated people. Use your enthusiasm to recruit other people who also have initiative and a willingness to help others. Consider seeking support from:

• Those who have experienced limb loss, limb difference, and/or their caregivers
• Prosthetists and orthotists
• Hospital and rehabilitation professionals

2. Establish the Integrity of the Group

If you are an amputee, person who has limb difference, or parent, guardian, or caregiver of a child who has limb loss and/or limb difference, the group should not be formally identified with a hospital, prosthetic & orthotic facility, or rehabilitation center. You may accept space or supplies from them, but you should refrain from being endorsed by one practitioner or facility over another if you want referrals from the entire community. (Note: Support groups created by a facility, as part of their service offerings to their patients, are an entirely different situation.)

3. Plan the Basics

Your group will be most likely to succeed if you:

• Understand your specific reasons for wanting to start a support group and outline the needs of potential group members
• Decide if your group should address specific needs (such as parents of children who have limb loss and/or limb difference)
• Establish the type of meeting that best meets the group’s needs by asking for input on meeting options, such as open discussion, social gatherings, or formal speaker presentations
• Connect with to the Amputee Coalition for support group leader education and resources

4. Find a Meeting Place

Look for free meeting space in your community (e.g., hospitals, churches, and senior or independent living centers). Remember to consider accessibility of the meeting place, including doorways, aisles in the meeting room, seating, restrooms, and parking.

5. Plan Program Topics and Speaker Resources

If your group has had its first meeting and discussed the types of programming it would like to have, this list of potential topics will help you get started:

• Prosthesis Issues
• Daily Living Challenges
• Medical Issues
• Sports and Recreation
• Legal Issues
• Fun Events, Programs, and Activities

Next Steps to Success 

The Amputee Coalition is committed to supporting volunteers who give of their time to help others in their communities. Through our relationships with support group leaders across the country, the limb loss and limb difference community benefits from more resources for support, education, and knowing that they are not alone.

For further questions, please email supportgroups@amputee-coalition.org.