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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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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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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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The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services. Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with
aplastic anemia…
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Caring for Yourself
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Therapies
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Bone Marrow Transplants
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Clinical Trials
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Drugs
More drugs are available to treat
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…
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Recently, there has been increased mention of
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 urine. Hemoglobin is the red…
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In this webinar, Dr. Abhay Singh discusses the latest MDS and AML research presented at the 2024 EHA and ASCO meetings. This is an advanced educational presentation.
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I was diagnosed with PNH fifteen years ago, at the age of 51. This is my story.
I grew up on the West Side of Los Angeles. Raised by a single parent, my mother was a strong woman of faith. My father, the eldest of twelve, died of a heart attack when I was about nine months old. Four of his six brothers, and a couple of my cousins died at an early age. My mother…
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Sarah was diagnosed with Severe
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…
in fall of 2015. Shortly…
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In this webinar, Jennifer Lotter explains medical terms most commonly used with a diagnosis of
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…
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In this webinar, Dr. Andrew Matthews discusses Low Risk MDS, current treatments and what's on the treatment horizon. Dr. Matthews took many questions from the live audience.
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When is a
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due…
offered as a treatment for MDS…
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Ellen Kalinosky describes her turbulent journey through multiple
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…
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Dr. Daria Babushok explains the medical condition of
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…
.…
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In this webinar, Doris Piccinin, registered dietician, will discuss how diet can play a role in living well with a
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…
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Patients can make a difference in the development of future treatments and the improvement of outcomes by participating in research. Check out the sections here to discover if any of these options are suitable for you.
Clinical Trials and Studies feature
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood…
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29-year-old Ricky Smith, Jr. has had
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…
disease for…
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Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he…
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As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.
He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease…
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Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
But the biggest competition he ever faced was at the tender age of six, when he was confronted 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…
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