Helpful resources

Aplastic Anemia & MDS International Foundation (AAMDSIF)

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.

Global Genes

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.

National Organization for Rare Disorders (NORD)

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.

The Mighty

The Mighty 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.

Greater Good Science Center

UC Berkeley offers research-based methods to help cultivate life skills like resilience, self-compassion, connection and optimism via quick, tangible strategies.

Very Well Mind

Very Well Mind 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.

Caregiver Action Network: Rare Caregivers

Caregiver Action Network is a large national advocacy organization that provides practical support to help individuals navigate the physical and emotional considerations of caring for a loved one. Rare Caregivers is their online resource that focuses solely on individuals with rare diseases. Here you’ll find articles, videos and stories on topics like accepting help, managing roles and communication. They also offer a phone-based Care Support Team to connect you to relevant resources.

Family Caregiver Alliance

The Family Caregiver Alliance provides resources and webinars focused on daily needs, including navigating emotional stress, employment considerations and self-care.

National Alliance for Caregiving

The National Alliance for Caregiving is a coalition of organizations focused on improving the quality of life for caregivers. Here, you can learn more about the research, policies and educational programs aimed at supporting caregivers’ needs.

Please note: The resources on this page are meant to be informational only and are not intended to replace medical advice. Always talk to your healthcare provider about any medical decisions, including how to manage the daily symptoms of PNH. Apellis Pharmaceuticals, Inc., is not affiliated with nor endorses any particular organization, and is not responsible for the content of any sites or resources we may link to from this website, and makes no guarantees about the accuracy of the information or the quality of support provided.