You are not alone in your experience. Let the PNH Research & Support Foundation connect you to answers, support, and hope.
Connecting with a community of other patients and families can be a powerful and uplifting experience. Tap into support services and community programs to learn from others, share your experiences, make new friends, and get involved by giving back. Whether you were diagnosed today or years ago, there are many benefits of being part of the PNH community. We want to help you find the support that meets your needs. Whether you are a newly diagnosed patient or have been living with your disease for many years, or whether you are caregiver or family member, we can help find the right opportunity and resources for you.
PNH Support Forum: This online forum provides support by sharing the personal experiences of the members who have or care about someone with PNH. To join, email firstname.lastname@example.org for instructions.
Marrowforums: Marrowforums was founded and is administered by former AA&MDSIF Board member and bone marrow failure disease survivor, Ruth Cuadra and her husband Neil. They have created this free online forum where aplastic anemia, MDS, and PNH patients, caregivers, and family members can find each other, make personal connections, and trade information and support.
Support Connection: The Support Connection consists of a national network of volunteers, including patients, caregivers and family members, willing to listen and offer comfort and support. In addition, volunteers may share personal experiences, coping strategies, problem solving skills and informational resources. Support sessions take place over the phone.
In-Person Support Groups
Communities of Hope: Volunteer led local support groups - to create an ongoing, local organization supporting patients and families, and raise awareness and support.
Join the conversation - meet other patients and family members, share stories, learn the latest news on:
PNH Connection: Sent quarterly (beginning in 2015), this newsletter connects you with recently posted website content particular to the PNH community. You will receive the most up-to-date information and support on all aspects of treating, managing, and living well with paroxysmal nocturnal hemoglobinuria.
eInsider: The monthly electronic newsletter (beginning in 2015, twice-monthly) from the Aplastic Anemia & MDS International Foundation covers resources available for the bone marrow failure community as well as outside events and information of interest to patients and families.
Patient Education Materials: Educational packets are mailed, free of charge, to all patients and families, health professionals and media. Packets include a disease-specific basic guide, as well as booklets on living well with bone marrow failure disease and informational fact sheets.
Research Summaries and Reviews for Patients and Caregivers: Lay-language summaries of scientific meetings involving bone marrow failure diseases