Alpha-thalassemia/mental retardation syndrome, x-linked

Organizations

Are there good support groups for alpha-thalassemia X-linked intellectual disability syndrome?

Because of the rarity of alpha-thalassemia X-linked intellectual disability syndrome, there are no large networks or support groups specifically focused on this disorder. Nonetheless, there are a couple of dedicated contact groups worldwide which can be located here . Additionally, there is an online support group, X-Linked Alpha Thalassemia M/R Syndrome Support Group which has about 260 members as of June 2019. Membership requires approval by group administration.

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Where do I find other people with alpha-thalassemia X-linked intellectual disability syndrome?

Where do I find other people with alpha-thalassemia X-linked intellectual disability syndrome?

If you are looking to speak with other families who have a loved one with alpha-thalassemia X-linked intellectual disability syndrome, consider asking your geneticist or genetic counselor if they are familiar with any local families who might be willing to do so. There is an online support group called X-Linked Alpha Thalassemia M/R Syndrome Support Group that you may also contact.

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