Together with our partner, the Aplastic Anemia & MDS International Foundation, the PNH Research & Support Foundation believes patients and their families should be well informed about their diagnosis and PNH treatment options. We recognize that one of the single most important things you can do is to see a specialist who understands the unique needs of PNH patients, and who knows about the latest treatments. The PNH Research & Support Foundation is dedicated to helping PNH patients in need with limited funding for disease-related expenses not covered by insurance.
You Are Not Alone
Because PNH is so rare, it is often difficult to connect to others who are dealing with issues similar to your own. We can help.
Use our Support Connection to access our one-to-one network of trained volunteer PNH patients, caregivers, and family members, willing to listen and offer comfort and support. Connect to our patient educator who can help with medical information, advice, and referrals. Email or phone (301) 279-7202 x140.
PNH Patient and Family Conferences
Seven AA&MDSIF Patient and Family Conferences are planned for 2016. Locations and dates are set for Rockville, MD on March 19, Cincinnati, OH on April 30, Seattle, WA* on June 18, Raleigh, NC on July 16, San Diego, CA on September 17, San Antonio, TX on October 8, and West Palm Beach, FL on November 6. Registration will be open in early January for all conferences. Learn more and mark your calendar!
*Joint event with the Fred Hutchinson Cancer Research Institute; different format.
We are dedicated to reporting and supporting clinical research that will develop new treatments, improve the lives of PNH patients, and ultimately cure paroxysmal nocturnal hemoglobinuria. Learn more about PNH Research & Support Foundation Research Grants and other important scientific meetings.