Facebook Groups to Help You Connect to a Larger Network of Coats Disease Families


The power of the internet to connect patient families of Coats’ Disease is something that is an important value for our foundation. On our Facebook page, we meet, connect with and share breaking news about Coats Disease with our community.

There are plenty of resources we recommend new patients or parents of children with Coats’ Disease join on Facebook. As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

  • Children and Families about Coats’ Disease (1.2K Members) A group which supports families of children with Coats’ Disease. A rare disease of the eye which causes leaking blood vessels in the retina, detatched retina, glaucoma, and blindness.
  • Raising Awareness of Coats’ Disease (2,440 Members) Support group of parents, patients and families of Coats’ Disease.
  • Coats’ Disease Awareness (560 Members) Raise awareness of Coats’ Disease and to provide a space where Coats’ Disease parents can reach out to each other, talk about their troubles, and celebrate their successes.
  • Coats’ Disease Fighting for Awareness (324 Members) To help children and families cope with this devastating illness and to learn from each other about Coat’s Disease and tell other’s about signs and symptoms to watch out for.
  • Curing Coats: https://www.facebook.com/CuringCoats/ Raising funds to support the Wilmer Eye Institute, who are working hard to find treatments and possible cures for Coats’ Disease. The funds raised will go directly to Dr. Akrit Shodhi and his team in their search for Coats’ Disease cures and treatments.

3 thoughts on “Facebook Groups to Help You Connect to a Larger Network of Coats Disease Families”

  1. blog says:

    Everything is very open with a really clear explanation of the issues.
    It was definitely informative. Your website is extremely helpful.
    Many thanks for sharing!

  2. Konstance says:

    My son was recently diagnosed with Coats disease… I’m wondering if there anything my husband and I can do to help improve his eyesight

    1. Sarah Kopac says:

      Konstance, the best advice we can offer is to discuss treatment options directly with your doctor. Since all Coats’ cases are different, treatments and expectations of vision loss are unique to each patient.

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