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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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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--(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...Article last updated May 30, 2023.Node ID (debugging only): 10016
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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...Article last updated May 30, 2023.Node ID (debugging only): 9948
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What is "Chemo Brain" and how is it managed? Find out the best approaches for dealing with this common side effect in this recording with Dr. Jorg Dietrich.Podcast Episode last updated May 30, 2023.Node ID (debugging only): 10109
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When should patients be vaccinated, and with which version of the COVID-19 Vaccine? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.Podcast Episode last updated May 30, 2023.Node ID (debugging only): 10096
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Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue. Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.Podcast Episode last updated November 21, 2022.Node ID (debugging only): 10082
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Learn all about the risks, benefits, and side effects of the transplantation process.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8332
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Dr. Inga Hofmann is a University of Wisconsin Health pediatrician who specializes and is director of pediatric bone marrow transplant and hematology. She is devoted to rare childhood bone failure diseases and myelodysplastic syndromes in her focus and Dr. Hofmann was recently appointed medical director of the PACT program for advanced cell therapy initiative, which is being led by Dr. Jacques...Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8256
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Why would I choose a clinical trial? What kind of additional care would I receive? How do I know if I qualify? Christina Cline, RN, BSN, CCRC, explains both patient and nurse navigator roles in this recent recording.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8470
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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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Senior Director of Health Professional Programs, Alice Houk, describes how your health care team can become your Partner toward health in this interview.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8175
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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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Patients who underwent allogeneic bone marrow transplantation (BMT) as children were at increased risk for severe or life-threatening chronic health conditions. These findings were presented during the American Society of Hematology (ASH) 62nd Annual Meeting and Exposition. For this study, 848 patients who survived at least 2 years after a BMT during early adulthood or adolescence (aged 22 years...Article last updated April 6, 2022.Node ID (debugging only): 9262
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September 16 through December 20 will stand out in Ashley’s mind. Forever. These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and bone marrow transplant. The summer of 2019 was already big with a wedding to plan. The toddler and her baby brother were enjoying everything that small ones do, including riding dirt bikes with Daddy. When an unusual...Patient Chronicle last updated February 16, 2022.Node ID (debugging only): 8640
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Each year, approximately 1 in every 1 million infants is diagnosed with pediatric myelodysplastic syndromes (MDS), a group of rare disorders characterized by the abnormal or deficient formation of blood cells in the bone marrow. However, researchers wanted to understand the underlying mechanisms behind this condition. In the past, both SAMD9 and SAMD9L mutations have been linked to pediatric MDS...Article last updated February 1, 2022.Node ID (debugging only): 9905
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Raising money for AAMDSIF through fundraising events also raises awareness for rare bone marrow failure diseases. Your participation by recruiting friends, family, and coworkers spreads the word and helps fund the mission of AAMDSIF.Sectioned page last updated April 18, 2024.Node ID (debugging only): 10336
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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 diseases. If you are a patient: please fill out the form below and a complete information packet will be mailed to you free of charge. Alternatively you can...Webform last updated April 12, 2024.Node ID (debugging only): 8326
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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. AAMDSIF...Page last updated April 4, 2024.Node ID (debugging only): 10356