Amyloidosis Foundation
Contact: 248-922-9610Population served: Patients and caregivers affected by amyloidosis, worldwide
Other language(s): SpanishMission:
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: 617-899-8810Population served: Individuals diagnosed with amyloidosis, caregivers, health professionals
Mission:
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: 866-404-7539Population served: People diagnosed with amyloidosis and their caregivers in the U.S.
Other language(s): SpanishMission:
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.