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In this recording, Dr. Ball Brian discusses low risk MDS and current treatment options.
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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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Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.
When he came home for the holidays, his mom, a veterinarian, suspected the rash could be
petechiae
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots…
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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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I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong,…
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When I 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…
, my world turned upside…
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In this webinar, patients diagnosed 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 low. Most…
discuss their…
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In this webinar, patients diagnosed with PNH discuss their patient journey and share their personal experiences.
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When Shauna was diagnosed with MDS, she knew she would have to leave her home in Alaska for treatment. She chose to move to North Carolina where her extended family lived. With access to specialists there, and having a supportive network, this proved to be an excellent plan.
Shauna began the ATG
protocol
protocol:
An action plan that describes what will be done in a…
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As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.
At the end of the semester, she fainted in the grocery store while on vacation. Her parents dropped everything to drive the miles in a…
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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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In this webinar, Dr. Alejandro Marinos Velarde discusses the risk factors that can cause post transplant relapse along with treatment and management of relapse. He answers questions from the live audience as well.
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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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“OK,” said Dr. A, as he pivoted away from the screen. “You don’t have to come back anymore.”
He said it without any great sense of ceremony. It was my annual appointment, about 4.5 years after my allogeneic
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…
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Dr. Swapna Thota describes the diagnosis, treatment, and survivorship 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…
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