Aniridia

Organizations

Are there good support groups for Aniridia?

Support groups include Aniridia Foundation International (http://www.make-a-miracle.org/), Aniridia Network UK (https://aniridia.org.uk/), and The Vision for Tomorrow Foundation (https://www.visionfortomorrow.org/aniridia-get-support/).

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Where do I find other people with Aniridia?

How do I start a support group for Aniridia?

Where do I find other people with Aniridia?

Online support groups are a good place to start. The Vision for Tomorrow Foundation has information on how to connect with other people who have aniridia or who are parents of children with aniridia. The Foundation also offers contact information to Debby Casher, a parent of a child with aniridia who can connect you with other parents or is also happy to "share her story and lend an ear." You can find her contact information here: https://www.visionfortomorrow.org/aniridia-get-support/. Additionally, there is a Facebook page that families use to ask questions and share experiences in the community known as UFA.

How do I start a support group for Aniridia?

When starting a support group, it may be best to recruit a co-leader or two who can follow along on the journey. Logistics include identifying potential members, naming the group, determining the time and place for meetings, and drafting a mission statement. After completing the basics, it is important to format the meetings and begin publicizing the support group.

Global Genes' Toolkits also provides information on how to start a support group.

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