Alstrom syndrome

Organizations

Are there good support groups for Alstrom syndrome?

As of February 2021, there is an international Alstrom syndrome support group based in the United States called Alstrom Syndrome International. This organization seeks to provide support, information, and coordination worldwide to families and professionals in order to treat and cure Alström Syndrome. Alstrom Syndrome UK is a patient-led charity in the United Kingdom that seeks to offering high quality support services which include access to the AS specialist clinics.

Larger umbrella groups may be able to provide networking, referrals, information and support for Alstrom syndrome. These organizations include the National Organization for Rare Disorders; Global Genes; and the Genetic Alliance.

References
  • Marshall, JD et. al. (2019, June). GeneReviews. Alstrom Syndrome. Retrieved on February 23, 2021 from https://www.ncbi.nlm.nih.gov/books/NBK1267/
  • Alstrom Syndrome International https://www.alstrom.org/
  • Alstrom Syndrome UKhttp://www.alstrom.org.uk/
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Where do I find other people with Alstrom syndrome?

Where do I find other people with Alstrom syndrome?

Support groups can put you in contact with other people or families that have Alstrom syndrome. As of 2021, there were about 1,200 people worldwide report in the medical literature with Alstrom syndrome. A support group called Alstrom Syndrome International is the best place to find other children and families dealing with this disorder in the United States.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

References
  • Alstrom Syndrome International https://www.alstrom.org/
  • Alstrom Syndrome UKhttp://www.alstrom.org.uk/
  • RareShare website. http://rareshare.org/
  • Rareconnect website. http://rareshare.org/
  • Inspire website. https://www.inspire.com/

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