Are you a patient who has experienced iron overload? What causes this condition? Why does it happen to patients with aplastic anemia, MDS, or PNH? Find answers to these questions and more in this recent webinar recording! Watch now: https://lnkd.in/eTQgu7SW
Aplastic Anemia & MDS International Foundation
Individual and Family Services
Bethesda, Maryland 692 followers
We provide answers, support and hope to patients with rare blood cancers and bone marrow failure diseases.
About us
The Aplastic Anemia and MDS International Foundation (www.aamds.org) is an American nonprofit health and patient advocacy organization that supports, connects and educates patients, caregivers and health professionals on rare bone marrow failure diseases worldwide. It promotes and invests in collaborative clinical research to accelerate the discovery of better treatments and the search for a cure for aplastic anemia, AML (acute myeloid leukemia), MDS (myelodysplastic syndromes), PNH (paroxysmal nocturnal hemoglobinuria) and related bone marrow failure diseases. AAMDSIF is a 501(c)3 organization.
- Website
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http://www.aamds.org/
External link for Aplastic Anemia & MDS International Foundation
- Industry
- Individual and Family Services
- Company size
- 11-50 employees
- Headquarters
- Bethesda, Maryland
- Type
- Nonprofit
- Founded
- 1983
- Specialties
- Patient Education, Caregiver Education, Research, Health Professional Education, Rare Diseases, Aplastic Anemia, Myelodysplastic Syndrome, Paroxysmal Nocturnal Hemoglobinuria, Acute Myeloid Leukemia, and Bone Marrow Failure Diseases
Locations
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Primary
4330 East West Highway, Suite 230
Bethesda, Maryland 20814, US
Employees at Aplastic Anemia & MDS International Foundation
Updates
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Patients with MDS: Watch Now Dr. Gail Roboz discusses the Molecular International Prognostic Scoring System (IPSS-M,) newly developed risk stratification model for myelodysplastic syndromes (MDS) in this webinar recording: https://lnkd.in/edj4xr8j #MDS #bloodcancer #myelodysplasia
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Whether you need information on Low-Risk MDS or about Nutrition for patients with #aplasticanemia, #MDS, or #PNH you can learn from these upcoming webinars! Low-Risk MDS: https://lnkd.in/egne6S-y Nutrition and Bone Marrow Failure: https://lnkd.in/eqA52Z9R or visit aamds.org/webinars for more!
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Happy Independence Day! The offices at AAMDSIF are closed on July 4-5, but the website is always open! Visit aamds.org at any time to find information on bone marrow failure diseases! Here are webinars for patients: https://lnkd.in/epnzB8h2 and here are fact sheets about diseases and therapies: https://lnkd.in/et-K557. Find easy-listening podcast episodes here: https://lnkd.in/e7iPZk_x. ~Taking the Journey Together~
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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 healthcare team now: https://lnkd.in/eGZBNDiF #marrowfailure #aplasticanemia #PNH #MDS
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"My life post-diagnosis left me trying to relearn who I was. " Read Josh's story of learning to travel as a dad with PNH and two children! https://lnkd.in/eatA8AEw #PNH #marrowfailure #travelingwithPNH
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The U.S. Food and Drug Administration (FDA) recently approved PIASKY (crovalimab-akkz) a complement C5 inhibitor approved for the treatment of adult and pediatric patients 13 years and older with paroxysmal nocturnal hemoglobinuria (PNH) and body weight of at least 88 pounds (40kg). FDA information: https://lnkd.in/dG2EzrRV
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You're not alone! Whether patient, parent, or family, there's an active support group for you! Check out this list of groups, and sign up for one in July. https://lnkd.in/e6hQKmtC Note: all are participant-led. They know what you are going through!
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She never gave up hope, not even during the darkest of times, during treatment for aplastic anemia. Read her compelling story here: https://lnkd.in/eRPmg3XH #aplasticanemia #marrowfailure
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Do you want a second opinion about your condition? Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. Listen to this episode here: https://lnkd.in/eh_S4YHt