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Amyloidosis

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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.


 

Amyloidosis Foundation

Contact: 248-922-9610
Population Served:

Patients and caregivers affected by amyloidosis, worldwide

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.

Amyloidosis Research Consortium

Contact: 617-467-5170
Population Served:

Individuals diagnosed with amyloidosis, caregivers, health professionals

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

Amyloidosis Support Groups Inc.

Contact: 866-404-7539
Population Served:

People diagnosed with amyloidosis and their caregivers in the U.S.

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.