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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: 
Community Fundraiser

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: 
Community Fundraiser

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.

2025 San Francisco - Bay Area Patient and Family Conference

WHO SHOULD ATTEND?

Register for the 2025 San Francisco Bay Area Patient and Family Conference
Event Date: 
Sat, 07/19/2025 - 10:30am (EDT)
Register Here for the 2025 San Francisco - Bay Area Patient and Family Conference »
Bone Marrow Disease(s): 
Conference Event Type: 
Patient and Family - Regional One Day