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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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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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I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24. I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be. I was 9-...Patient Chronicle last updated March 7, 2024.Node ID (debugging only): 7399
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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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Evan biked daily. He had no symptoms. The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.Podcast Episode last updated January 11, 2024.Node ID (debugging only): 10406
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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.Podcast Episode last updated January 4, 2024.Node ID (debugging only): 10334
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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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Charles J. Parker, M. D., is Professor of Medicine in the Division of Hematology and Hematologic Malignancies, Department of Internal Medicine, at the University of Utah, the Huntsman Cancer Institute and the George E. Whalen VA Medical Center, Salt Lake City, UT.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8251
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Kat hears patients ask: "I have this bone marrow failure problem ... how is this going to affect me and loved ones? What does this mean for my life?" Discover how Kat helps walk patients through diagnosis, treatment, and survivorship.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8211
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H. Joachim Deeg, MD, is a board certified oncologist at Seattle Cancer Care Alliance, a University of Washington Professor of Medicine and Oncology and a researcher at Fred Hutchinson Cancer Research Center.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8253
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Nancy has worked with hundreds of patients in her career, guiding patients through decision-making and treatment. Discover her best advice for bone marrow failure patients and caregivers in this podcast.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8187
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This is the first episode of our new podcast. Leigh Clark, Patient Educator, describes the bone marrow failure journey and how AAMDSIF can help!Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8157
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"Never give up!" That's Brandi's advice to patients. Her diagnosis was months in coming, and then more time to find the best allogenic donor for her transplant---over 19 months in the hospital between diagnosis and successful transplant.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8178
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Bunny has PNH, but is living the survivor's life! Joe, her dear husband, has been her caregiver since the illness began. Listen to how they are sharing the journey here.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8176
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FOR IMMEDIATE RELEASE November 25, 2020 The Aplastic Anemia and MDS International Foundation (AAMDSIF) and Acceleron Pharma Inc. Announce Partnership Exploring the Mental Health Implications of Myelodysplastic Syndromes (MDS) Among Adult MDS Patients and Their Caregivers in the U.S. (Bethesda, MD, November 25, 2020) The Aplastic Anemia and MDS International Foundation (AAMDSIF) and Acceleron...Article last updated March 1, 2022.Node ID (debugging only): 9231
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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...Article last updated January 24, 2022.Node ID (debugging only): 9849