patient
March for Marrow: Walk for PNH NJ / NY
Join us in Verona Park, NJ on Sunday, September 28, 2025 for a day of remembrance and awareness in celebration of the 19th Annual Walk for PNH.
The Walk for PNH is the nation's largest event to raise awareness and funds for PNH education and research. This inspiring event calls on participants of all ages and abilities to join in the fight against PNH.
AAMDSIF Joins Coalition Urging the Administration to Preserve our Nation’s Newborn Screening Program
Original Publication Date
Article Source
Coalition Action
A coalition of 272 organizations signed a public letter to the Secretary, Department of Health and Human Services, addressing the decision to eliminate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). While each state may add on additional…
Judy's Story of PNH - Always Moving Forward - 2025 Kansas City Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Judy talks about her PNH journey from diagnosis, treatment decisions and moving forward.
PNH and Current Therapies - from the 2025 Kansas City Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Srinivasa Reddy Sanikommu, MD
In this recording, Dr. Srinivasa Sanikommu discusses current thinking on PNH and therapies that are available to patients. Recording includes the question-and-answer session.
PNH Complications, from the 2025 Kansas City Patient and Family Conference
Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Srinivasa Reddy Sanikommu, MD
In this recording, Dr. Srinivasa Sanikommu discusses PNH complications that can impact a patient - extravascular hemolysis, intravascular hemolysis, Budd-Chiari Syndrome and blood clots. Recording includes the question-and-answer session.
Transplant and GVHD Session - 2025 Kansas City Patient and Family Conference
Topic(s)
Bone Marrow Transplant
In this recording, Dr. Anurag Singh discusses transplant and potentials complications such as GVHD and treatment options. Recording includes the question-and-answer session.
Living Well with Bone Marrow Failure, from the 2025 Kansas City Patient and Family Conference
Topic(s)
Living Well with Bone Marrow Failure
Managing Your Treatment
In this recording, Dr. Furha Cossor discusses living with bone marrow failure and fatigue management. Recording includes the question-and-answer session.
Urge your Members of Congress to Reverse the 57% Cut to the Congressionally Directed Medical Research Program
Original Publication Date
Article Source
Take Action
Federal budget negotiations are already under way. April 15 marks the 30-Day anniversary of the enactment of the 57% cut to CDMRP including the elimination of all funding to Bone Marrow Failure Research. Every medical research program at CDMRP directly impacts the health and…