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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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Driven by his mother’s advice and his father’s memory, Richard M. Stone, MD, rose to become a global leader in leukemia care and research.
Growing up, Richard M. Stone, MD, thought he was going to be an attorney like his father, but his direction in life changed when he was 15. His father, Benjamin, developed kidney cancer when Stone was just 5 years old, and 10 years later, the disease…
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The mRNA COVID-19 Vaccines Are Safe and Effective for Most Patients with Cancer
For most patients with cancer, the mRNA COVID-19 vaccines are safe and effective. This article explains the results of the first study that evaluated the safety and effectiveness of the mRNA vaccines in patients with solid cancers, such as lung, breast, or prostate cancer.
November 2021 – Lung Cancer
Laura Morgan
The…
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AAMDSIF provides educational materials for patients and healthcare professionals written in plain language and reviewed by highly respected and recognized medical doctors who are experts in
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,…
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The biennial Symposium will bring together physicians treating these diseases; laboratory researchers studying genetics, genomics, and
pathophysiology
pathophysiology:
Functional changes in the bodies that are associated with or result from disease or injury.
of
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy…
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The 10th International
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 Scientific…
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AAMDSIF receives support from corporate partners who invest in advancing our mission. Thanks to their financial contributions, we are able to provide answers, support, and hope to patients, their families, and healthcare professionals entrusted with providing quality care.
AAMDSIF Corporate Partners provide financial and in-kind support of programming through sponsorships and grants.…
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Alicia Rovó is a Senior Attending/ Deputy Phychian-in-chief and Head of the Clinial Hematology Unit at Bern University Hospital in Switzerland. Her top areas of expertise are
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…
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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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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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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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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 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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Deferiprone
Deferiprone:
Deferiprone is in a class of medications called iron chelators. It works by attaching to iron in the body so that it can be excreted (removed from the body).
Deferiprone comes in a pill form and is taken by mouth. Deferiprone is approved for use in Europe. Researchers in the U.S. are studying…
is in a class of medications called iron chelators. It works by…
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The U.S. Food and Drug Administration (FDA) approved
fludarabine
fludarabine:
The U.S. Food and Drug Administration (FDA) approved fludarabine for treating chronic lymphocytic leukemia (CCL). Researchers are studying fludarabine in combination with other medicines for treating bone marrow failure.
for treating chronic lymphocytic leukemia (CCL). Researchers are studying fludarabine in…
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It is known as a hematopoietic
growth factor
growth factor:
A substance made by the body that stimulates the bone marrow to produce blood cells. Some growth factors are man-made in the laboratory and used for treating low blood counts. These include red blood cell growth factors called erythropoietin (EPO) and darbepoetin, and white blood cell growth…
or colony stimulating factorand is…
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Deferoxamine
Deferoxamine:
Deferoxamine is an iron-binding agent that belongs to a class of drugs known as heavy metal antagonists. It works by helping the kidneys and gallbladder get rid of the extra iron.
is an iron-binding agent that belongs to a class of drugs known as heavy metal antagonists. It works by helping the kidneys and gallbladder get rid of the extra iron.
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Intimacy
"Intimacy need not end 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 can be…
disease.…
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(excerpted from Thomas’ Hematopoietic Stem Cell Transplantation, 5th Edition)
The first interface many patients have with an HCT transplant program occurs at the time they come for a second opinion. Often patients make a consultation appointment to compare a particular program with other centers they are considering. These patients meet with a transplant physician to review their options, a…
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