pediatric patient / parent

AAMDSIF Joins Coalition Urging the Administration to Preserve our Nation’s Newborn Screening Program

Original Publication Date

May 6, 2025

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…

Living Well with Bone Marrow Failure, from the 2025 Kansas City Patient and Family Conference

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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

April 14, 2025

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…

2025 San Francisco - Bay Area Patient and Family Conference

Read more about 2025 San Francisco - Bay Area Patient and Family Conference

Recorded Sessions:

Nutrition for Aplastic Anemia, MDS, or PNH

Managing PNH Treatments

Advances in Aplastic Anemia

AAMDSIF Supports the Accelerating Kids' Access to Care Act

Original Publication Date

March 26, 2025

Article Source

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…

Putting Treatment Behind Him: Webb's Journey through Aplastic Anemia

Read more about Putting Treatment Behind Him: Webb's Journey through Aplastic Anemia

Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.

Karyn Brundige, MSN, CPNP

Institution

Dana-Farber Cancer Institute

Physician Status

accepting new patients

Primary Disease Area of Focus

Pediatric

Read more about Karyn Brundige, MSN, CPNP

Hassan Alkhateeb, MD

Institution

Mayo Clinic - Rochester

Physician Status

accepting new patients

Primary Disease Area of Focus

Acute Myeloid Leukemia (AML)

Aplastic Anemia

Chronic Lymphocytic Leukemia (CLL)

Chronic Myelomonocytic Leukaemia (CMML)

Myelodysplastic Syndromes (MDS)

Myeloproliferative Neoplasms (MPN)

Paroxysmal Nocturnal Hemoglobinuria (PNH)

Pediatric

Read more about Hassan Alkhateeb, MD

Kathleen Overholt, MD

Institution

Riley Children’s Hospital at Indiana University

Physician Status

accepting new patients

Primary Disease Area of Focus

Pediatric

Read more about Kathleen Overholt, MD

Learn about PNH (Paroxysmal Nocturnal Hemoglobinuria)

Original Publication Date

September 27, 2024

Article Source

AAMDSIF Web Content

Recently, there has been increased mention of paroxysmal nocturnal hemoglobinuria (PNH) in the news and on social media. As part of our mission, the Aplastic Anemia and MDS International Foundation (AAMDSIF) works with leading PNH specialists to provide patients, their support…

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pediatric patient / parent

AAMDSIF Joins Coalition Urging the Administration to Preserve our Nation’s Newborn Screening Program

Living Well with Bone Marrow Failure, from the 2025 Kansas City Patient and Family Conference

Urge your Members of Congress to Reverse the 57% Cut to the Congressionally Directed Medical Research Program

2025 San Francisco - Bay Area Patient and Family Conference

Recorded Sessions:

AAMDSIF Supports the Accelerating Kids' Access to Care Act

Putting Treatment Behind Him: Webb's Journey through Aplastic Anemia

Karyn Brundige, MSN, CPNP

Hassan Alkhateeb, MD

Kathleen Overholt, MD

Learn about PNH (Paroxysmal Nocturnal Hemoglobinuria)

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