2025 Chapel Hill Patient and Family Conference
CONFERENCE AGENDA - October 18, 2025
(Eastern Time Zone)
Event Date:
Sat, 10/18/2025 - 7:30am (EDT)
Bone Marrow Disease(s):
Conference Event Type:
family / friend
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.
Event Date:
Sun, 09/28/2025 - 10:30am (EDT)
Bone Marrow Disease(s):
Community Event Type:
2025 Golf Tournament in Memory of Kimberly Owens
As we prepare for the upcoming golf tournament, benefiting AAMDSIF a nonprofit organization that helps people living with PNH, it is with a heart full of fond memories that we take a moment to reflect on Kim, whose spirit truly embodied kindness and positivity. She always had a smile on her face, uplifting everyone around her, even on challenging days.
Event Date:
Thu, 05/29/2025 - 8:00am (EDT)
Bone Marrow Disease(s):
Community Event Type:
Hack for Marrow
Hack for Marrow is a week-long global hackathon designed for teenagers aged 13 to 19. Whether you're a passionate coder or exploring programming for the first time, we’d love to have you join us!
Participants may compete individually or in teams of up to three members. To register, simply click the “Register” button above to sign up as an individual or with your team.
Event Date:
Fri, 08/01/2025 - 12:00am (EDT) to Fri, 08/08/2025 - 11:59pm (EDT)
Bone Marrow Disease(s):
Community Event Type:
AAMDSIF Joins Coalition Urging the Administration to Preserve our Nation’s Newborn Screening Program
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 screenings, this Committee ensured standardized measurements and procedures, to endure early detection of newborn conditions.
AAMDSIF signed the letter, attached below, to endorse maintaining the Advisory Committee on Heritable Disorders in Newborns and Children.
Living Well with Bone Marrow Failure, from the 2025 Kansas City Patient and Family Conference
In this recording, Dr. Furha Cossor discusses living with bone marrow failure and fatigue management.
Urge your Members of Congress to Reverse the 57% Cut to the Congressionally Directed Medical Research Program
Federal budget negotiations are already under way.
2025 San Francisco - Bay Area Patient and Family Conference
WHO SHOULD ATTEND?
Event Date:
Sat, 07/19/2025 - 10:30am (EDT)
Bone Marrow Disease(s):
Conference Event Type:
Oppose 57% Cut to Congressionally Directed Medical Research Programs
Oppose 57% Cut to Congressionally Directed Medical Research Programs
Take Action Before House Vote
Oppose 57% Cut to Congressionally Directed Medical Research Programs
Tell your Members of Congress to Vote NO on The Full-Year Continuing Appropriations and Extensions Act, 2025
Pediatric Nurse Finds her Way through Aplastic Anemia Treatment
Pediatric nurse to medical student to patient? This was Claire's life. Listen to her story here.