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AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his
myelodysplastic syndromes
myelodysplastic syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells.…
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AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey 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…
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What does this FDA approval mean for patients with PNH? Find out how this oral medication, Fabhalta, could replace one of the infusion treatments in this interview with Dr. Bart Scott.
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Here is a discussion about recent FDA approval of Tibsovo for Relapsed/Refractory MDS with Dr. Amir Fathi, who is an Associate Professor of Medicine at Harvard Medical School and the Director of the Leukemia Program at Massachusetts General Hospital.
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This episode focuses on the US Food and Drug Administration expanded access approval of luspatercept or Reblozyl with Dr. Guillermo Garcia-Manero, Chief of the Section of MDS in the Department of Leukemia at MD Anderson Cancer Center in Houston.
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Learn about the Americans with Disabilities Act and how it applies to patients. Attorney Chris Mills shares his expertise in this episode.
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What type of documentation do you need to take advantage of the Family Medical Leave Act? Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their
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…
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Thank you for attending the 2023 Salt Lake City Patient and Family Conference. We will keep uploading presentations as we receive them, please keep checking back for updates.
Presentation Materials:
Predisposition to Inherited Bone Marrow Failure Syndromes
Aplastic Anemia and Non-Transplant Therapies
MDS and Non-Transplant Therapies
PNH and Non-Transplant Therapies
Ask the…
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PURPOSE:
Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to…
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It is incredibly important that patients with MPNs inform their health care team of any symptoms they are experiencing, according to an expert from The Mays Cancer Center at UT Health San Antonio MD Anderson Cancer Center.
Because patients with essential thrombocythemia (ET) or polycythemia vera (PV) — rare types of blood cancers known as myeloproliferative neoplasms (MPNs) — experience a range…
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June 2, 2022
- Omidubicel is a first-in-class, advanced NAM-enabled stem cell therapy candidate being evaluated as the first potential allogeneic advanced cell therapy donor source for patients with blood cancers in need of a transplant –
- Omidubicel has
Orphan Drug
Orphan Drug:
A drug or biologic agent that treats a rare disease or condition. A disease is considered rare if fewer…
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BOSTON, May 25, 2022 – Servier, a leader in oncology committed to bringing the promise of tomorrow to the patients we serve, today announced that the U.S. Food and Drug Administration (FDA) approved TIBSOVO® (ivosidenib tablets) in combination with
azacitidine
azacitidine:
It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch…
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Key Points
Structural racism (SR) assessed by census tract variables accounts for nearly all Black-white and Hispanic-white disparity in AML survival.
Structural Racism is a stronger mediator of survival disparities than molecular features, co-morbidities, healthcare access and treatment.
Non-Hispanic Black (NHB) and Hispanic patients with
acute myeloid leukemia
acute myeloid leukemia…
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Abstract
Background
Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer.
Procedure
AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences. Clinical information was obtained from the electronic…
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Editor's note: Here's an update on Mychaela (see Stories of Hope)
Mychaela Lovelace is a sophomore at Michigan State University majoring in kinesiology in the College of Education, and is a scholar and mentor in the Dow STEM Scholars Program.
On April 1, 2008, at the age of 5 I was diagnosed with severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh)…
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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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BOSTON--(BUSINESS WIRE)--Aug. 1, 2022-- Gamida Cell Ltd. (Nasdaq: GMDA), the leader in the development of NAM-enabled cell therapy candidates for patients with hematologic and solid cancers and other serious diseases, announced today that the U.S. Food and Drug Administration (FDA) has accepted for filing the Company’s Biologics License Application (BLA) for omidubicel for the treatment of…
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A small portion of adults in remission from a deadly blood cancer had persisting mutations detected, which predicted their risk of death from having the cancer return
Researchers at the National Institutes of Health show the benefits of screening adult patients in remission from acute myeloid leukemiaexternal link (AML) for residual disease before receiving a
bone marrow transplant
bone…
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ABSTRACT
PURPOSE
Myelodysplastic syndromes
Myelodysplastic syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at…
(MDS) are…
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