Helpful organizations
Helpful organizations
Support starts here
Many organizations offer information and helpful resources for people with PNH. Below are just a few.
Aplastic Anemia & MDS International Foundation (AAMDSIF) (opens in new tab)
Since 1983, AAMDSIF (opens in new tab) 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 (opens in new tab).
Global PNH Patient Registry (opens in new tab)
Created by the Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD), the Global PNH Patient Registry (opens in new tab) 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 to anyone diagnosed with PNH.
Global Genes (opens in new tab)
Global Genes (opens in new tab) 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.
National Organization for Rare Disorders (NORD) (opens in new tab)
NORD (opens in new tab) 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 MedicAlert (opens in new tab)
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 (opens in new tab) provides eligible individuals with a MedicAlert product and three years of membership.
RareConnect (opens in new tab)
RareConnect (opens in new tab) 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.
The Mighty (opens in new tab)
The Mighty (opens in new tab) is a digital health community created to empower and connect people living with health challenges. You can find stories, videos, webinars and articles, all gathered from the more than 2 million members living with serious health conditions.
Better Living with PNH (opens in new tab)
Provided by the Canadian Association of PNH Patients (opens in new tab), the Better Living with PNH (opens in new tab) [link as above] program offers ten weeks of fitness, nutrition, yoga and meditation tips to help you live better with PNH.
Greater Good Science Center (opens in new tab)
UC Berkeley (opens in new tab) offers research-based methods to help cultivate life skills like resilience, self-compassion, connection and optimism via quick, tangible strategies.
Very Well Mind (opens in new tab)
Very Well Mind (opens in new tab) is an online resource in support of mental health and balance. It includes a robust library of more than 4,000 pieces of content written by doctors, therapists and social workers to help improve health and happiness.
