Diverse people in a support group
Health & Well-Being

Finding A Vision Loss Support Group

Jun 30, 2023

Finding A Vision Loss Support Group

People dealing with vision loss often find a great benefit in talking with others who understand and live with the same challenges. Connecting with others who are going through similar experiences, provides an opportunity to share first hand knowledge, coping strategies, concerns and emotions. A supportive group can fill the void not addressed by medical care or the support of family and friends.

Support groups may be in-person, tele-support or online communities. The groups may be led by professional or non-professional facilitators. Some groups offer guest speakers and educational programming. They may be offered through a non-profit advocacy group, clinic, hospital, community center or independent entity.

Finding the group with common experience is not usually as easy as a Google search. Access and availability is dependent on location and limits in size.

People in a support group
People in a support group

How to Explore the Possible Options

  • Ask Your Physician and Healthcare Team

First inquire with your doctor, or low vision specialist, and their office staff, or patient advocate, for programs they recommend or refer to. They will know of local resources or vision rehab agencies offering support programs. If they have no resources, ask for an introduction to another patient who is adjusting well.

  • Contact Vision Rehab Organizations Near You

Reach out to agencies serving people with vision loss in your area. Ask to speak with a counselor or social worker about support groups offered.

  • Research Community Center Programs

Senior and community centers are an excellent resource for support groups, particularly focused on age-related vision loss and low vision. If your local center is not providing these programs, ask them if they know of other centers that do. 

  • Contact Local Chapter Organizations

For support groups serving people with a specific type of vision loss, or disease, it is helpful to contact local groups in your area to learn about support programs offered. In this context, a Google search can give you direct contact info, For macular degeneration, go to MDSupport.org and MacularSociety.org or learn about TeleSupport. Learn about support groups for inherited retinal diseases through local chapters of Foundation Fighting Blindness, and for glaucoma through the Glaucoma Research Foundation.

  • Facebook Communities & Support Groups

Search communities and support groups on Facebook that are disease specific or more general in focus: Stargardt DiseaseDiabetic Retinopathy, Macular Degeneration, Retinitis Pigmentosa, Low Vision and Blindness.

For comments, questions or feedback, email us, or connect on Facebook or Twitter. We would love to hear from you!

About the Author: Dorrie Rush

Dorrie Rush is the Chief Content Officer and Visual Accessibility Expert at Ophthalmic Edge Patients (OE Patients), an online resource, presented by the Association for Macular Diseases, providing practical information and empowering advice for living a full and successful life with vision loss.

She is the former Director of the Grunwald Technology Center and Information Resource Service at Lighthouse International 2001 to 2016. Dorrie is known to have an eccentric view, which is particularly useful in compensating for her central vision loss from Stargardt Disease.



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