aamds.orgAplastic Anemia and MDS International Foundation (AAMDSIF)

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Patient Helpline | Find a Specialist Personalized Search Subscribe Donate Patients and Families Education Patient and Family Conferences Patient and Family Webinars Podcast Episodes Patient Guides and Fact Sheets Order Patient Educational Materials FAQs Support Find a Specialist Patient and Family Support Groups Patient and Family HelpLine Peer Support Network External Resources Health and Wellness Caring for Yourself Advice for Caregivers Veteran Patient Care Stories of Hope News and Treatment Updates Diseases and Treatments Aplastic Anemia Causes Symptoms Diagnosis Types Drugs and Treatments Aplastic Anemia Toolkit Myelodysplastic Syndromes (MDS) Causes Symptoms Diagnosis Types Drugs and Treatments MDS Toolkit Paroxysmal Nocturnal Hemoglobinuria (PNH) Causes Symptoms Diagnosis Drugs and Treatments PNH Toolkit PNH Patient Travel Assistance Fund Related Diseases Acute Myeloid Leukemia (AML) Chronic Lymphocytic Leukemia (CLL) Chronic Myelomonocytic Leukemia (CMML) Chronic Myeloproliferative Neoplasms (MPN) Graft vs. Host Disease (GVHD) Myelofibrosis (MF) Pure Red Cell Aplasia (PRCA) Research Medical Research Basics Medical Research Process Types of Research What are Registries? Understanding Clinical Trials Clinical Trials in Depth Clinical Trials and Children Participate in Research Spotlight Clinical Trials Global PNH Patient Registry AAMDSIF Sponsored Research Grants and Grant Recipients Global PNH Patient Registry Research Articles Health Professionals Upcoming Professional Conferences and Webinars Professional On-demand Education GVHD Network Fund Your Research AAMDSIF Research Grants Program Department of Defense Research Grant Program How to Help Donate Ways to Give Fundraise Volunteer Corporate PartnersMission and History Vision and Mission Statements Milestones Leadership Awards Board of Directors Medical Advisory Board Patient Advisory Council AAMDSIF Staff Financials Subscribe Aplastic Anemia and MDS International Foundation Serving the aplastic anemia, myelodysplastic disease syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure disease communities, AAMDSIF empowers patients and their families, invests in research that speeds the search for new treatments and potential cures, promotes high-quality care by educating healthcare providers, and ensures our patients’ voices are heard through awareness and advocacy. Quick Links: Resources for You Patient Education Research Patient Guides Find a Specialist The AAMDS International Foundation has been an integral part of our life since Mario’s diagnosis 13 years ago. We have gained knowledge, support and, most importantly, developed lasting relationships. We continue to depend on them to provide cutting-edge information and patient and family support. AAMDSIF Events and Inspiration Patient and Family Conferences » 2024 Seattle Patient and Family Conference Saturday, June 22, 2024 - 8:00am The time is now to save your seat for the 2024 Patient and Family Conference in Seattle! Plan to attend on June 22, 2024, in Seattle, WA, in... March for Marrow » March for Marrow Virginia 2024 Saturday, September 21, 2024 - 8:00am March for Marrow 5K Run & Walk in Arlington, VA. Sunday, October 1st. For 40 years, the Stories of Hope » Update on Alayna: Loving Kindergarten, but Mom still worries Ashley and Alayna Numbers Alayna is doing all the normal activities for a child her age. Learning to read, making many friends, and taking gymnastics are parts of... Professional Conferences » Ninth International Bone Marrow Failure Disease Scientific... March 21, 2024 The biennial Symposium will bring together physicians treating these diseases; laboratory researchers studying genetics, genomics, and... Online Library Webinars » Advances in Treating Aplastic Anemia April 13, 2024 In this webinar, Dr. Ronald Paquette discusses the latest advances in treating aplastic anemia. This was also recorded from a live session... Podcast Episodes » Recent FDA Approval of Danicopan for Patients with PNH AAMDSIF Podcast for Patients Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria . Conference Materials » 2023 New Haven Patient and Family Conference Saturday, October 14, 2023 - 8:15am On October 14, 2023, Patient and Family Hybrid Conference, in Partnership with Yale Cancer Center, was held in New Haven, CT. Find recordings... Research Articles » SOHO State of the Art Updates and Next Questions: An Update on... Originally published: March 18, 2024 Higher-risk myelodysplastic syndromes (HR-MDS) are clonal myeloid neoplasms that cause life-limiting complications from severe cytopenias and... Together, We are Impacting the Lives of Patients and Families "The AAMDSIF community has been a safe space to land in a turbulent and often unpredictable storm. Patients with bone marrow failure disease and their families need all the support they can get. AAMDSIF provides patients and their families with critical resources like educational webinars, conferences, and support groups." Your donation supports our mission » Notice: Javascript is not enabled inon the www.aamds.org site, please enable Javascript, and whitelist us in any privacy plugins you may be running. The Aplastic Anemia & MDS International Foundation is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world. We are a patient-focused, patient-centered organization, serving patients and families throughout the three phases of bone marrow failure diseases: the life changing phase of diagnosis the life threatening phase of treatment the life long phase of living with a chronic disease Get the latest AAMDSIF updates in your inbox Subscribe Stay Connected Patient Helpline The Aplastic Anemia and MDS International Foundation (800) 747-2820 | (301) 279-7202 Fax: (240) 534-2231 info@aamds.org 4330 East West Highway, Suite 230 Bethesda, Maryland 20814 U.S.A. Legal Notices Privacy and Other Policies Acknowledgements Donate Careers at AAMDSIF A 501(c)(3) organization. Tax ID: 52 1336903 Copyright 2024 Aplastic Anemia and MDS International Foundation | All Rights...