April 18-24 is Volunteer Appreciation Week! We'd like to extend our sincerest thanks to all who have helped the bone marrow failure community through your efforts with AAMDSIF! |
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Registration is open for this VIRTUAL conference! We're partnering with Fred Hutchinson Cancer Center to bring you expert perspectives on bone marrow failure diseases, diagnosis, and treatments. Use the link below to discover all the topics for discussion! |
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 | Here are the next All-New Webinars for you! All Times EDT-US Friday, April 23, 2021 - 2:00 pm Intimacy and Bone Marrow Failure
Tuesday, April 27, 2021 - 2:00 pm Haploidentical Transplant for MDS Monday, May 10, 2021 - 11:30 am Hereditary MDS
Wednesday, May 12, 2021 - 2:30 pm Combination Therapies in Relapsed/Refractory AML
Thursday, May 20, 2021 - 12:00 pm ASH 2020: MDS Updates |
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Live Video Presentation on Thursday, May 6th at 10:00 AM EDT |
|  | Join expert clinicians, a patient advocate, and a patient for “Establishing Goals of Therapy While Managing Myelodysplastic Syndromes,” an interactive discussion of MDS and potential treatment approaches. This hour-long educational session taking place at 10:00 AM EDT on Thursday, May 6. Register HERE! |
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Life Interrupted – Nick’s Fight Against Aplastic Anemia |
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From baseball, to transplant, to pitching again! Read Nick's amazing Story of Hope HERE |
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| |  | | |  | Help make this event special -- Sign up to participate in the Virtual March for Marrow California, 5K Run and Patient and Family Walk! Gather your friends and family to walk as a team; everyone is welcome to participate in the virtual event. Dates: April 24 – May 1, 2021 Location: Anywhere! You can walk with us in your neighborhood, on a treadmill, or donate and sleep in! Time: Kick-Off Event on April 24th at 9:00 AM PST and closing program on May 1 at 9:00 AM PST |
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 | Are you looking for others who are dealing with the same issues that you're experiencing? The Virtual Support Groups are for you! If you would like to be in a safe place to talk about what you are going through, or if you would like to encourage others, please check out the Virtual Support Groups HERE. Together, we are strong! |
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 | The primary objective of this study is to assess the safety and tolerability of REGN7257 in patients with severe aplastic anemia (SAA) that is refractory to or has relapsed while on standard of care immunosuppressive therapy (IST). |
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 | The purpose of this study is to evaluate the efficacy of danicopan as add-on therapy to a complement component 5 (C5) inhibitor (eculizumab or ravulizumab) in participants with PNH who have clinically evident EVH. |
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Treating Options for MDS/AML Patients Who Cannot Tolerate Standard Chemotherapy: A recent clinical trial (NCT03404193) looked at the benefits for patients by adding Venetoclax (VENCLEXTA) to decitabine as a treatment option for patients with higher-risk MDS and newly diagnosed AML. The study has found that the combination is well tolerated and can help control abnormal cells enough to prepare patients for transplant. There are some side effects which you should discuss with your treating hematologist/oncologist. You can read about this study and others in our ASCO EHA 2020 Research Summaries: MDS/AML here: https://www.aamds.org/education/patient-guides-and-fact-sheets |
| ASH 2020: MDS Updates: We've scheduled a second webinar for MDS patients to review important findings from the December 2020 ASH meeting with Dr. Hetty Carraway, Cleveland Clinic. You are invited to submit your questions in advance to help@aamds.org or during the live webinar on May 20, 2021. Registration is now open: ASH 2020: MDS Updates: We've scheduled a second webinar for MDS patients to go over all of the important findings from the December 2020 ASH meeting with Dr. Hetty Carraway, Cleveland Clinic. You are invited to submit your questions ahead of time to help@aamds.org or during the live webinar on May 20, 2021. Registration is now open: https://www.aamds.org/webinar/ash-2020-mds-updates |
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