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Amyloidosis is a rare disorder in which there is a buildup of an abnormal protein called amyloid. There are many different types of amyloidosis, most of which are not associated with a blood cancer. The main type of amyloidosis is light-chain amyloidosis, also called AL amyloidosis. AL amyloidosis can occur by itself or with myeloma.
To raise awareness of amyloidosis and support medical and scientific research toward a cure; to provide assistance to patients in understanding the disease and in finding doctors with experience with amyloidosis.
- Produces educational materials and newsletters
- Provides information about clinical trials for amyloidosis
- Provides a listing of institutions and medical schools with experience in amyloidosis.
Patients and caregivers affected by amyloidosis, worldwide248-922-9610 http://www.amyloidosis.org/
To accelerate the development of advanced diagnostic tools and effective treatments for systemic amyloidosis.
- Provides disease information, publications and videos
- Free Amyloidosis Clinical Resources app
- Online Clinical Trial Finder Tool
- Advocates on public policy issues related to amyloidosis
Individuals diagnosed with amyloidosis, caregivers, health professionals617-467-5170 http://www.arci.org/
To assist amyloidosis patients, caregivers and former caregivers.
- Funds and maintains libraries of educational materials for all support groups
- Maintains a 24/7 toll-free line to answer all support inquiries
- Offers referrals to face-to-face support meetings; online support via a listserve mailings
- Sponsors amyloidosis symposiums for education purposes throughout the year
- Provides information about clinical trials for amyloidosis.
People diagnosed with amyloidosis and their caregivers in the U.S.866-404-7539 http://www.amyloidosissupport.com