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Judy talks about her PNH journey from diagnosis, treatment decisions and moving forward.
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In this recording, Dr. Srinivasa Sanikommu discusses current thinking on PNH and therapies that are available to patients. Recording includes the question-and-answer session.
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In this recording, Dr. Srinivasa Sanikommu 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…
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In this recording, Dr. Anurag Singh discusses transplant and potentials complications such as GVHD and treatment options. Recording includes the question-and-answer session.
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In this recording, Dr. Furha Cossor discusses living with
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…
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In this webinar, Drs. Fadi Haddad and Jayastu Senapati discuss the diagnosis secondary AML from MDS, treatment options available to patients and symptom management.
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AAMDSIF advocates for and invests in collaborative research to accelerate the discovery of better treatments and cures for bone marrow failure disorders.
AAMDSIF Research Grants
Since 1989, AAMDSIF has supported innovative research into the causes of
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough…
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Because patients need help in different ways, we offer a variety of support services. From the patient/family HelpLine and support networks to live conferences, online classes and volunteer events, our aim is to positively impact as many lives as we can. Our community members contribute to that goal by sharing their own inspirational Stories of Hope, supporting each other's need to stay…
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Watch
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…
experts at the 2025 AAMDSIF
Bone Marrow Failure…
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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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