AAMDSIF Advocacy in Action
AAMDSIF is committed to advancing the Bone Marrow Failure Community’s interests with members of Congress, regulatory agencies, and other policy makers by increasing awareness of our diseases, providing opportunities for engagement, and elevating our patients’ stories. The Advocacy Actions on this page highlight the Foundation's efforts to ensure that your voices are being heard by those who can advance our cause.
Status Update Support is Growing to Restore Funding to CDMRP and BMFRP Research Programs
Originally Published: 06/09/2025
Type: Status Update
Thanks to the efforts of our AAMDSIF bone marrow failure community and coalition partners, a bipartisan group of 105 U.S. House and 29 Senate members urged their leaders to restore funding to the Congressionally Directed Medical Research Programs (CDMRP) including the Bone Marrow Failure Research Program (BMFRP).
In March, Congress cut funding to the CDMRP by 57% and cut ALL funding to CDMRP’s Bone Marrow Failure Research Program. This means new lifesaving and cutting-edge research through the BMFRP that could lead to treatments for Aplastic Anemia, MDS, PNH, and related bone marrow failure...
AAMDSIF Calls for Restoration of Bone Marrow Failure Research Funding
Originally Published: 05/19/2025
Type: Coalition Action
The Aplastic Anemia and MDS International Foundation joined 156 other members of the Defense Health Research Consortium (DHRC) in calling for Congress to restore funding in Fiscal Year 2025 for the Congressionally Directed Medical Research Program (CDMRP) which includes the Bone Marrow Failure Research Program. AAMDSIF and the Consortium Members also called on Congress to increase funding for research through the CDMRP in Fiscal Year 2026 to approximately $123 million. Restoring this funding will help ensure that our country is prepared to meet current and future public health-related...
AAMDSIF Joins Coalition Urging the Administration to Preserve our Nation’s Newborn Screening Program
Originally Published: 05/06/2025
Type: 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 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.
Urge your Members of Congress to Reverse the 57% Cut to the Congressionally Directed Medical Research Program
Originally Published: 04/14/2025
Type: 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 lives of the U.S. military, their families, veterans, and the public. Research breakthroughs have led to new clinical trials, new drug products, and novel procedures that are making a difference in the everyday lives of patients and families.
Join other Patients and Families in Urging your Members of Congress to...
AAMDSIF Supports the Accelerating Kids' Access to Care Act
Originally Published: 03/26/2025
Type: Coalition Action
AAMDSIF Supports the Accelerating Kids' Access to Care Act.
On March 26, 2025, AAMDSIF joined with 212 additional patient advocacy and medical center organizations in urging members of the US Congress to pass the Accelerating Kids’ Access to Care Act.
Passage of this bill will permit faster, more thorough care, for children with complex medical conditions.
Please view the PDF below.
Oppose 57% Cut to Congressionally Directed Medical Research Programs
Originally Published: 03/10/2025
Type: Community Impact
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
As early as this Tuesday, the House will be voting on a continuing resolution to fund government programs through the end of fiscal year 2025 (FY25).
This legislation cuts FY25 funding for the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) from $1.509 billion to $650 million – a 57...
Letter on the Bipartisan Senate FY25 Labor-HHS-Education Appropriations Bill
Originally Published: 02/24/2025
Type: Coalition Action
AAMDSIF is Taking a Stand for NIH Research
Research programs led by the National Institutes of Health (NIH) forge the way for life-saving new treatments for rare diseases such as aplastic anemia, MDS, and PNH. With clinical research locations throughout the U.S., researchers and clinicians discover and refine treatments for these patients, bringing hope to the bone marrow failure community.
The recent cuts to funding through the NIH have real-life impact on researchers and clinicians as well as the patients enrolled in clinical trials and receiving treatment for these diseases.
With...