Support starts here
Many organizations offer information and helpful resources for people with PNH. Below are just a few.
- Information about PNH
- Support living with a rare disease
- Wellness resources
- Support for spouses and partners
Since 1984, 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 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.
UC Berkeley offers research-based methods to help cultivate life skills like resilience, self-compassion, connection and optimism via quick, tangible strategies.
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.
The Family Caregiver Alliance provides resources and webinars focused on daily needs, including navigating emotional stress, employment considerations and self-care.