Support starts here
Many organizations offer information and helpful resources for people with PNH. Below are just a few.
Since 1983, AAMDSIF has been a constant source of support for people living with PNH, aplastic anemia and myelodysplastic syndrome. They offer a wide range of educational tools, resources, community events and programs, as well as a Peer Support Network to help connect you with other community members who may have similar experiences. They also have a robust list of resources that can be found here.
Created by the Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD), the Global PNH Patient Registry aims to advance knowledge of PNH. Information from the community is used to support research, provide insight on treatments and help understand the progression of PNH over time. Participating is voluntary, free and open t o anyone diagnosed with PNH.
Global Genes is an organization founded by caregivers, family members and friends of those living with rare diseases. In addition to advocating for the rare disease community as a whole, they offer a library of toolkits, videos and e-learning courses, as well as Rare Concierge, a program providing access to genetic counseling services.
NORD offers a broad range of support services related to living with a rare disease, including information on health insurance, financial support, healthcare policies and scientific research. They also host RareEDU, a webinar series featuring live presentations on topics like self-advocacy, care coordination, the role of specialty pharmacies and how to make your health insurance work for you.
NORD and MedicAlert Foundation have teamed up on a new program to provide protection to rare disease patients in emergency situations. NORD’s MedicAlert® Assistance Program provides eligible individuals with a MedicAlert product and three years of membership.
RareConnect is a platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. The organization partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
UC Berkeley offers research-based methods to help cultivate life skills like resilience, self-compassion, connection and optimism via quick, tangible strategies.