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2024 Patient and Family Conference in Los Angeles Recordings will be coming soon! The conference offered special post-transplant sessions. Conference Location: Cooper Auditorium @ City of Hope 1500 E. Duarte Rd Duarte, CA 91010 Parking: Lots HV or G The parking lots are next to the Hope Village Hotel located on the Northwest corner of the City of Hope Campus. (Duarte Rd and Village Rd) Friday...Conference Event last updated April 25, 2024.Node ID (debugging only): 10461
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Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria.Podcast Episode last updated April 18, 2024.Node ID (debugging only): 10528
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Damian was very active when routine blood work showed a problem. But Damian decided that going through treatment would be his mission, even if that meant two transplants. Listen here to his story.Podcast Episode last updated April 11, 2024.Node ID (debugging only): 10525
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Register now for the 2024 Patient and Family Conference, held in partnership with the University of Chicago. Learn more about your bone marrow failure disease from the experts in the sessions - Register Here. Conference Location: University of Chicago David Rubenstein Forum 1201 E 60th Street Chicago, IL 60637 Parking: Two options: 1. Street...Conference Event last updated April 1, 2024.Node ID (debugging only): 10463
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Registration is open for the Tampa, FL, Patient and Family Conference. Please join your peers and bone marrow failure experts for this opportunity! Register Here The event will be held at the Moffitt Cancer Center, Stabile Research Building, 12902 USF Magnolia Dr., Tampa, FL 33612 Parking: Gold Valet - Paid by AAMDS Gold Garage (free self-parking on level 3)Conference Event last updated April 1, 2024.Node ID (debugging only): 10497
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The conference will occur over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET. This conference will provide sessions for both adults and children. At the hotel, parking is valet only and paid by AAMDSIF. Conference location - The Inn at Penn @ 3600 Sansome Street Philadelphia, PA 19104Conference Event last updated April 1, 2024.Node ID (debugging only): 10487
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The time is now to save your seat for the 2024 Patient and Family Conference in Los Angeles! Plan to attend on June 22, 2024, in Seattle, WA, in partnership with Fred Hutchinson Cancer Center - Register Here Conference Location: Fred Hutchinson Cancer Research Center Weintraub Building 1100 Fairview Ave N Seattle, WA 98109 Parking: There is parking in front of the Weintraub...Conference Event last updated April 1, 2024.Node ID (debugging only): 10462
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On October 14, 2023, Patient and Family Hybrid Conference, in Partnership with Yale Cancer Center, was held in New Haven, CT. Find recordings or materials from this conference here. Session Recordings: High-Risk MDSConference Event last updated March 15, 2024.Node ID (debugging only): 10486
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Although it sounds strange, I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radiation treatments in early 2016. I saw my oncologist every month due to my treatment and she ran blood work every...Patient Chronicle last updated March 7, 2024.Node ID (debugging only): 7654
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I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was...Patient Chronicle last updated March 7, 2024.Node ID (debugging only): 7859
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34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry. She’s directed numerous bone marrow drives and fundraisers, bringing thousands of new DNA donors to the...Patient Chronicle last updated March 7, 2024.Node ID (debugging only): 7932
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Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern. Patients with aplastic anemia, paroxysmal nocturnal hemoglobinuria (PNH), myelodysplastic syndromes (MDS), and acute myeloid leukemia (AML), family members, caregivers, nurses, and other health care professionals are welcome and...Conference Event last updated March 4, 2024.Node ID (debugging only): 10219
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Highlights Haploidentical stem cell transplantation with post-transplantation cyclophosphamide (PTCy-haplo) and umbilical cord blood transplantation (UCBT) achieved similar overall survival in adult patients with aplastic anemia. The rate of neutrophil engraftment was higher in the PTCy-haplo group than in the UCBT group. The cumulative incidence of grade II-IV acute graft-versus-host disease...Article last updated January 22, 2024.Node ID (debugging only): 10417
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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, or MDS, patient journey.Podcast Episode last updated January 11, 2024.Node ID (debugging only): 10408
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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.Podcast Episode last updated January 11, 2024.Node ID (debugging only): 10404
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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.Podcast Episode last updated January 11, 2024.Node ID (debugging only): 10403
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. He also shares his own perspective about asking for a second opinion, recommending that patients do select this option.Podcast Episode last updated September 21, 2023.Node ID (debugging only): 10335
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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...Conference Event last updated August 3, 2023.Node ID (debugging only): 10287
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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 for the treatment of patients with newly diagnosed IDH1-mutated acute myeloid leukemia (AML) in adults 75 years or older, or who have...Article last updated May 30, 2023.Node ID (debugging only): 9972
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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 (AML) have higher mortality rates...Article last updated May 30, 2023.Node ID (debugging only): 9949