Hereditary hemorrhagic telangiectasia
Organizations
Are there good support groups for hereditary hemorrhagic telangiectasia?
Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for HHT include: Cure HHT.
References
- Hereditary hemorrhagic telangiectasia. The National Organization for Rare Disorders website. Accessed February 23, 2017. https://rarediseases.org/rare-diseases/hereditary-hemorrhagic-telangiectasia/
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Where do I find other people with hereditary hemorrhagic telangiectasia?
Where do I find other people with hereditary hemorrhagic telangiectasia?
Support groups can put you in contact with other people or families that have hereditary hemorrhagic telangiectasia HHT). Support groups for HHT include Cure HHT.
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
- Hereditary hemorrhagic telangiectasia. The National Organization for Rare Disorders website. Accessed February 23, 2017. https://rarediseases.org/rare-diseases/hereditary-hemorrhagic-telangiectasia/
- RareConnect webiste. https://www.rareconnect.org/en
- RareShare website. http://rareshare.org/
- Inspire website. https://www.inspire.com/
