Amyloidosis Alliance
- Amyloidosis Alliance: communication and mutual support between patients organizations. The amyloidosis alliance supports the fight against amyloidosis worldwide and accompanies patient organisations in different countries.
Amyloidosis Army
- Amyloidosis Health Awareness Initiative: Variant V122i Pilot Campaign. Amyloidosis Army recognizes the pivotal role community leaders play in fostering health awareness and education. Their V122i initiative provides valuable opportunities to educate and empower communities, aiming to raise awareness about amyloidosis and promote early detection diagnosis and intervention.
Amyloidosis Foundation
- Provides educational material, financial resources toward medicine, as well as caregiver resources.
Amyloidosis Ireland
- Volunteer organisation advocating for and empowering ATTR amyloidosis patients across all of Ireland.
Amyloidosis Program of Calgary
- A multidisciplinary program that brings together expertise from multiple specialties to deliver - and improve - integrated care for amyloidosis patients in the Calgary region.
Amyloidosis Research Consortium
- Dramatically improving the lives of patients with amyloidosis and accelerating cutting edge research through collaborative, groundbreaking initiatives.
Amyloidosis Support Network
- Online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases.
Amyloidosis UK
– Formerly known as UKATPA. Supporting people affected by hereditary and
wild-type ATTR
amyloidosis.
Australian Amyloidosis Network
- The AAN is a federation of state-based Centres of Excellence and Affiliates, dedicated to the accurate diagnosis and optimal management of Australian patients with all types of amyloidosis.
Canadian Amyloidosis Support Network
- Committed to making a positive difference in the lives of amyloidosis patients and families by promoting awareness, offering patient support, and funding high-value research projects.
Caregiver Action Network
- Caregiver Action Network (CAN) is the nation’s leading family caregiver organization. It works to improve the quality of life for tens of millions of family caregivers.
CaringBridge
– Connecting family and friends through any health journey.
Drive for Five Network
- The Drive For Five Network is actively involved in advocacy to develop and pass smart legislative policies at the state and federal levels encouraging greater participation in live organ donation. There’s 90,000 Americans on waits lists but only about 27,000 deceased and live organ donors annually.
EveryLife Foundation for Rare Diseases
– Advocating for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
Family Caregiver Alliance
– Resources to improve the quality of the life for family caregivers and the people who receive their care.
Genetic Alliance
- Genetic Alliance engages individuals, families and communities to transform health.
Global Genes
- Dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.
Healthwell Foundation
- Co-pay fund for amyloidosis may be currently closed, but you can sign up to receive alerts when the fund opens.
National Alliance for Caregivers
- The National Alliance for Caregiving is a non-profit coalition of national organizations who share a vision of a society that values, supports and empowers family caregivers to thrive at home, work and life.
National Organization for Rare Disorders (NORD)
- NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Does offer travel assistance for access to clinical trials for Amyloid.
NeedyMeds
- A comprehensive resource for finding patient assistance programs, including those related to amyloidosis. They provide information on prescription assistance, co-pay programs, and other financial aid options.
oneAMYLOIDOSISvoice
- Created to transform the health of those impacted by amyloidosis through a collaborative digital platform that provides greater disease knowledge, emotional support and empowerment.
Pan Foundation
- Fund for financial assistance toward treatment. May be closed, but sign up to receive alerts when fund opens.
Rare Life Solutions
- We forge the connections that engage, unify, and amplify the voices of patients, advocates, and caregivers to inform and accelerate the development and commercialization of emerging treatments.
Rare New England
- Bringing together New England patients, families and providers touched by rare and complex disorders.
Rare Rising
- Advancing change for rare diseases. Committed to supporting the collective movement to ensure healthcare is accessible to everyone in need.
Transplant Journey
- Their mission seeks to empower individuals and their families with knowledge and guidance to facilitate a positive Transplant Journey while improving the overall experience.
TTR Amyloidosis Canada
- Advancing research, improving awareness, and enhancing quality of life for those individuals living with TTR amyloidosis.