There are many organizations that offer support for those who help others. Here are just a few.
A leader for advocating for people with blood disorders like PNH, AAMDSIF offers support for everything from financial resources to help with travel to scholarship resources. Visit their website here.
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.
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.
TakeCare is a collaboration between the National Alliance for Caregiving and the Adira Foundation that supports state, local, and national public health efforts. Since respite is not available to many families, this program also identifies and shares tips for families on how to practice self-care at home.
The Care Community is a forum that enables those caring for others to anonymously ask questions of other caregivers and the broader community.
The Caregiver Action Network has a 24-hour help desk, which can be reached at [855.227.3640]. They can also be reached via email or via the chat icon on the same page.
The Caregiver Support Group is a private group on Facebook that is meant to provide encouragement to all caregivers (private, family member, professional, etc.).
Caring Bridge is a private and ad-free platform that allows users to create individual sites to share important medical/health updates with friends/family, as well as to ask for support when it’s needed most. These private sites let users know what’s happening with their health journey, through a quick update, a longer Journal entry, a photo, or even a video. It’s a more private way to share information than traditional social media.
Miracle Flights provides free flights to those in need of life-changing medical care not found in their local communities. The service is open for both adults and children but interested parties must meet certain eligibility criteria. Flights are not limited, and many users are “frequent flyers” and have used this service over several years.
The NORD Respite Program is a first-of-its-kind assistance program designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder. The program provides financial assistance to enable the caregiver to attend a conference, event or simply have an afternoon or evening away.
The Genetic and Rare Disease Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) that provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
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.