Adamtsl4-related eye disorders
Organizations
Are there good support groups for ADAMTSL4-related eye disorders?
As of May 2019, there are no support groups specifically for people with ADAMTSL4-related eye conditions. There are support groups for people who are affected by low vision in general. In addition, the Pediatric Glaucoma and Cataract Family Association may have useful resources if you have a child with an ADAMTSL4-related eye condition. Your eye doctor may be able to put you in touch with low vision support groups in your area.
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Where do I find other people with ADAMTSL4-related eye disorder?
How do I start a support group for ADAMTSL4-related eye disorder?
Where do I find other people with ADAMTSL4-related eye disorder?
To our knowledge, there is no database or registry of people with ADAMTSL4-related eye disorders at this point. You may have to ask your doctor if they know of anyone with the same disorder, and your doctor could get their permission to be contacted by you. You can also look for general support groups for people who are affected with low vision. These support groups vary from state to state, but you eye doctor may be aware of some in your area. The Glaucoma Research Foundation also offers information and support for individuals experiencing glaucoma. Also, Family Connect is a support group for families affected by vision impairment.
References
How do I start a support group for ADAMTSL4-related eye disorder?
If you would like to connect with local families with similar disorders, ask your eye doctor if they have other patients with an ADAMTSL4-related eye disorder that may be willing to talk to you. Your doctor could share your contact information with them (with your permission, of course), or get their permission to give you their contact information.
