Finding Support
Olympic athlete Greg Foster shares his journey from symptoms to diagnosis after seeing more than a dozen doctors. Read more
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
There are several public and closed Facebook groups including:
- Australia: www.amyloidosis.com.au
- Brazil: www.abpar.org.br
- Canada: www.amyloidosiscanada.org
- Finland: www.suomenamyloidoosiyhdistys.fi
- France: www.amylose.asso.fr
- Germany: www.amyloidose-selbsthilfe.de
- Netherlands: www.amyloidose.nl
- Portugal: www.paramiloidose.com
- Sweden: www.famynorrbotten.se
- United Kingdom: www.amyloidosis.org.uk
- United States: www.amyloidosis.org
- National Organization for Rare Disorders: www.rarediseases.org
- Genetic Alliance: www.geneticalliance.org
- Global Genes: www.globalgenes.org
- European Rare Disease Organization: www.eurordis.org
- EveryLife Foundation: www.everylifefoundation.org
- Family Caregiver Alliance: www.caregiver.org
- National Alliance for Caregivers: www.caregiving.org
- Caregiver Action Network: www.caregiveraction.org
