Finding Support
Navigating Your Next Steps
Jennifer Greenman, LCSW, shares how ARC & our resources can best serve and support you.
Having a rare disease can feel isolating. Finding the right support is critical for you and your caregivers to be able to adjust to living with amyloidosis.
There are a variety of support groups all over the world that can connect you to patients and caregivers living through similar experiences.
ARC has a number of resources to assist you through your journey. We can connect you to medical professionals and treatment centers so that your questions are answered, and you have access to the quality care you deserve.
Get Information and Support
A specialist on our team can provide treatment information, resources and the support you need to navigate your diagnosis.
Find Clinical Trials and Treatment Centers
My Amyloidosis Pathfinder (MAP) connects amyloidosis patients to appropriate treatment centers and clinical trials specific to the patient’s type and stage of disease.
The Amyloidosis Support Groups website has details of support groups across the US.
Other United States amyloidosis support groups:
- Northern California – contact dena.heath@att.net
- Washington – contact seattleamyloidosisgroup@yahoo.com
- Mayo Clinic Forum
- Smart Patients (an amyloidosis community in partnership with Amyloidosis Foundation)
There are several public and closed Facebook groups including:
- The Center for Chronic Illness
- Will require signing up with Hey Peers
- National Suicide Hotline: Dial or Text 988 or Chat Here
- Center for Chronic Illness
- Mental Health America
- Mental Health Resources for Marginalized Communities
- National Association on Mental Illness
- Emotional Wellness Checklist
- Finding a Therapist
- Find Empathy (specializes in health)
- Inclusive Therapists
- Psychology Today
- APA Therapist Locator
- Australia: Australian Amyloidosis Network
- Brazil: Associação Brasileira de Amiloidose (abpar)
- Canada: Canadian Amyloidosis Support Network (CASN)
- Finland: Suomen Amyloidoosiyhdistys (SAMY)
- France: Association Française Contre l’Amylose (AFCA)
- Germany: Amyloidose Selbshilfegruppe
- Netherlands: Amyloidose Nederland
- Portugal: Associação Portuguesa de Paramiloidose
- Sweden: FAMY Norrbotten
- United Kingdom: Amyloidosis UK & Rare Minds
- United States: Amyloidosis Foundation
