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.
ARC’s PEER Link program connects amyloidosis patients and caregivers with a trained peer mentor for one-to-one support around shared experiences.
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:
- Amyloidosis Research Consortium
- Amyloidosis Support Groups
- Amyloidosis International
- Amyloidosis FAP-TTR-Hereditary
- Amyloidosis – Wild-type – ATTR
- Amyloidosis Gelsolin Hereditary
- AA Secondary Amyloidosis
- Amyloidosis Awareness
Clinician Led Support Groups:
- The Center for Chronic Illness (support groups for anyone impacted by chronic illness and rare disease)
- Will require signing up with Hey Peers
- Chive Charities — helping individuals with rare medical conditions, military families, veterans and first responders access to things needed to manage your health through grants.
- Find Help — financial assistance, food pantries, medical care, and other free or reduced cost help.
General Medication Assistance Programs
Pharmaceutical Company Assistance Programs
- 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
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.
