Please note that these resources are regularly reviewed to ensure that links still work correctly and that the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect, please email firstname.lastname@example.org. If you would like for us to consider adding your organization to this resource, please complete and submit this form.
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.
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.
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
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.