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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…
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In this recording, Dr. Philip Scheinberg discusses PNH complications that can impact a patient - extravascular
hemolysis
hemolysis:
(hi-MOL-uh-suss) The destruction of red blood cells.
, intravascular hemolysis,
Budd-Chiari Syndrome
Budd-Chiari Syndrome:
(bud-kee-AR-ee SIN-drome) A blood clot in the major vein that leaves the liver (hepatic vein). The liver and the spleen may…
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In this recording, Dr. Phillip Scheinberg discusses
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…
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Join us in endorsing the recent appeal to Congress with the following actions. Your voice is important to continue these services for patients and provide opportunities for researchers to find the cures.
Read the letter to Congress from Research!America, with AAMDSIF and 600 other organizations, here.
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An experimental complement inhibitor C5
monoclonal antibody
monoclonal antibody:
A type of protein called an antibody that is engineered to look for a specific substance in the body. There are many kinds of monocloncal antibodies. Each one looks for only one substance. Eculizumab (Soliris) is an monoclonal antibody that may be prescribed to treat patients with paroxysmal…
. By blocking…
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In this recording, Dr. Parveen Shiraz discusses transplant for MDS and potentials complications such as GVHD and treatment options.
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The 2025 Patient and Family Conference in Rockville, MD was held on March 8, 2025.
Below are links to conference session recordings in full.
Aplastic Anemia and Transplant
PNH Complications with Philip Scheinberg
Aplastic Anemia
MDS and Transplant
Low Risk MDS
Debra's Story - Aplastic Anemia
MDS and MPNs
PNH
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In this recording, Dr. Bhumika Patel discusses what is new in PNH and current treatment options available to patients.
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In this recording, Dr. Catherine Lai discusses MDS and how patients can also be diagnosed with MPN's. Her presentation discusses the treatment options available to patients and resources.
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Debra shares both her experiences and how she maintained hope with
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…
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In this recording, Dr. Ball Brian discusses low risk MDS and current treatment options.
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Watch AML experts at the 2025 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…
Summit…
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Watch MDS experts at the 2025 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…
Summit…
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Watch PNH experts at the 2025 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…
Summit…
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In this webinar, Dr. Amy DeZern discusses the latest in transplantation and GVHD for
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…
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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
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…
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The AAMDSIF PNH Patient Travel Assistance Fund is available to U.S.-based PNH patients for up to $800 in travel assistance per patient, per year, to see a PNH specialist or get a second opinion from a PNH specialist. Grantees will be permitted to travel with one companion utilizing funds from the grant. Grants will be awarded based on the thorough completion of the required application form…
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In this webinar, Dr. Taha Bat discusses research most relevant to patients reported over the past year on the biology and treatment on
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…
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She was a sophomore in high school. Before she could try out for Cheer squad, she had to have a physical.
The routine Complete Blood Count revealed a problem.
Xinyi was then referred to a pediatric
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
. At the same time, she continued…
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In this webinar, Dr. Akriti Jain discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and AML. These studies were presented at the American Society of Hematology (ASH) 2024 meeting and their findings will be explained along with the potential impact of this research on understanding and treating MDS and AML. This is an advanced scientific…
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