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Recordings:
Aplastic Anemia
Low Risk MDS
High Risk MDS to AML
Transplant and GVHD
MDS/MPN Overlap
A Patient Story: Shauna McMillian
Managing PNH Complications
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Session Recordings Available:
MDS to MPN Overlap from the 2025 Boston Patient and Family Conference
High Risk MDS from the 2025 Boston Patient and Family Conference
Low Risk MDS from the 2025 Boston Patient and Family Conference
What is Aplastic Anemia? From the 2025 Boston Patient and Family Conference
What is PNH? Webinar recorded at the 2025 Boston Patient and Family Conference…
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Here are links to the conference sessions from the 2025 Kansas City Patient and Family Conference:
MDS/MPN Overlap
PNH and Current Therapies
Living Well with Bone Marrow Failure
Judy's Story of PNH
Transplant and GVHD
Aplastic Anemia
PNH Complications
High Risk MDS
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Evan biked daily. He had no symptoms. The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.
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Recorded Sessions:
Nutrition for Aplastic Anemia, MDS, or PNH
Managing PNH Treatments
Advances in Aplastic Anemia
What is PNH?
Transplant and GVHD: Aplastic Anemia and PNH
Inherited Bone Marrow Failure (focus on pediatrics)
Expert Panel: Pediatric Bone Marrow Failure
Life After Diagnosis - Pediatrics
Pediatric MDS
Transitioning to Adult Care
Pediatric PNH
Pediatric Aplastic…
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Donna Gilbride explains her journey through diagnosis and treatment with MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development.…
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Dr. Satheesh Chonat explains how pediatric patients with PNH, or
Paroxysmal Nocturnal Hemoglobinuria
Paroxysmal Nocturnal Hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the…
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Pediatric nurse to medical student to patient? This was Claire's life. Listen to her story here.
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Thanks to the efforts of our AAMDSIF
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
community and…
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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.
The…
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The
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
and MDS International Foundation joined 156 other…
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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.
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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…
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Veronica learned that delaying treatment was not a good idea.
That delay nearly ended her life.
In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so…
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Watch these sessions 2024 Patient and Family Conference, held in partnership with the University of Chicago.
Aplastic Anemia
Advances in Treating PNH
Fatigue Management
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2024 Patient and Family Conference in Los Angeles
Session Recordings:
Transplant for Aplastic Anemia and MDS
Emerging Therapies in High-Risk MDS
Cardiovascular Concerns after HCT
Supportive Care Management
Advances in the Therapy of PNH
Advances in Treating Lower-Risk MDS
Palliative Care
Living with Chronic GVHD
A Patient Story
Inherited Bone Marrow Failure Syndromes
Advances in…
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Due to the impact on the Tampa, Florida community and surrounding areas by Hurricanes Helene and Milton, the AAMDSIF Tampa Patient and Family conference has been cancelled.
We will be announcing future webinars so stay tuned for more information from us.
Our thoughts are with all of those impacted by these devastating storms.
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The conference was held over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET.
Watch these recordings from conference sessions:
High-Risk MDS
A Patient Story
Aplastic Anemia
GVHD - Graft VS Host Disease
Low-Risk MDS
PNH
Nutrition and Bone Marrow Failure
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Watch these recordings from the Conference Sessions:
What is my Diagnosis?
Aplastic Anemia
Inherited Bone Marrow Failure
Leukemic Transformation
Myelodysplastic Syndromes
MDS and Transplant Therapies
MPN Transplant Therapies
MPN Non-Transplant Therapies
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MINNEAPOLIS, June 14, 2024 — NMDPSM, a global nonprofit leader in cell therapy, and the CIBMTR® (Center for International Blood and Marrow Transplant Research®) announced interim results from the ACCESS trial as an oral abstract during the European Hematology Association (EHA) Annual Meeting in Madrid, Spain. The study demonstrated that adults with hematologic malignancies who received peripheral…
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