Amyloidosis, hereditary, transthyretin-related
Organizations
Are there good support groups for hereditary transthyretin amyloidosis?
Several organizations for hereditary ATTR amyloidosis provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups include: the Amyloidosis Foundation and the Amyloidosis Support Groups. The Amyloidosis Research Consortium is a nonprofit organization dedicated to address critical needs in clinical trials and related research for systemic amyloid diseases.
Some organizations can provide information about specific symptoms associated with hereditary transthyretin amyloidosis, including the Foundation for Peripheral Neuropathy or the American Heart Association. The American Liver Foundation can provide information about a liver transplant, which is a treatment option for people with hereditary transthyretin amyloidosis. This is because the abnormal transthyretin protein that causes the disorder is made in the liver.
References
- The Amyloidosis Foundation website. http://www.amyloidosis.org/
- The Amyloidosis Research Consortium website. http://www.arci.org/
- The Amyloidosis Support Groups website. http://www.amyloidosissupport.org/
- Sekigima Y, Yoshida K, Tokuda T. Familial Transthyretin Amyloidosis. GeneReviews website. Retrieved September 26, 2017 from https://www.ncbi.nlm.nih.gov/books/NBK1194
- Amyloidosis. The National Organization for Rare Disorders website. Retrieved from https://rarediseases.org/rare-diseases/amyloidosis/
More Organizations Content
Where do I find other people with hereditary transthyretin amyloidosis?
Where do I find other people with hereditary transthyretin amyloidosis?
Support groups can put you in contact with other people or families with hATTR amyloidosis. Support groups include the Amyloidosis Foundation and the Amyloidosis Support Groups. The Amyloidosis Research Consortium is a nonprofit organization dedicated to address critical needs in clinical trials and related research for systemic amyloid diseases.
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
- RareConnect website. https://www.rareconnect.org/
- RareShare website. http://rareshare.org/
- Inspire website. https://www.inspire.com/
