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In this webinar, Dr. Sally Arai discusses the latest in treating
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low…
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In this webinar, Drs. Christin Destefano and Drew Helmar discuss the link between military toxic exposure and hematologic malignancies.
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Who should not take RYTELO?
Before taking RYTELO, tell your healthcare provider about all your medical conditions, including if you:
are pregnant or plan to become pregnant. RYTELO may harm your unborn baby and may cause loss of pregnancy. Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with RYTELO.
are breastfeeding or plan to…
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In this webinar, Kylie Chen, Registered Dietitian, discusses common nutrition challenges and evidence-based strategies to improve nutritional status and learn easy nutrition swaps.
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Allen had a gratifying life. He had a wife and a two-year-old, living on a farm, working in the Post-Anesthesia Care Unit at the teaching hospital. He exercised, ran, hiked, hunted, fished, and more, enjoying the outdoors, his family, and his career.
In January, he had the worst case of the flu he had ever experienced. The 104-degree fevers lasted several days. He…
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My life before I was diagnosed with
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
was pretty busy! I…
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Oppose 57% Cut to Congressionally Directed Medical Research Programs
Take Action Before House Vote
Oppose 57% Cut to Congressionally Directed Medical Research Programs
Tell your Members of Congress to Vote NO on The Full-Year Continuing Appropriations and Extensions Act, 2025
As early as this Tuesday, the House will be voting on a continuing resolution to fund government programs…
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In this webinar, Drs. Fadi Haddad and Jayastu Senapati discuss the diagnosis secondary AML from MDS, treatment options available to patients and symptom management.
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Because patients need help in different ways, we offer a variety of support services. From the patient/family HelpLine and support networks to live conferences, online classes and volunteer events, our aim is to positively impact as many lives as we can. Our community members contribute to that goal by sharing their own inspirational Stories of Hope, supporting each other's need to stay…
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Federal budget negotiations are already under way.
April 15 marks the 30-Day anniversary of the enactment of the 57% cut to CDMRP including the elimination of all funding to Bone Marrow Failure Research.
Every medical research program at CDMRP directly impacts the health and lives of the U.S. military, their families, veterans, and the public. Research…
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Join us in endorsing the recent appeal to Congress with the following actions. Your voice is important to continue these services for patients and provide opportunities for researchers to find the cures.
Read the letter to Congress from Research!America, with AAMDSIF and 600 other organizations, here.
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An experimental complement inhibitor C5
monoclonal antibody
monoclonal antibody:
A type of protein called an antibody that is engineered to look for a specific substance in the body. There are many kinds of monocloncal antibodies. Each one looks for only one substance. Eculizumab (Soliris) is an monoclonal antibody that may be prescribed to treat patients with paroxysmal…
. By blocking…
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AAMDSIF is Taking a Stand for NIH Research
Research programs led by the National Institutes of Health (NIH) forge the way for life-saving new treatments for rare diseases such as
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The…
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The AAMDSIF PNH Patient Travel Assistance Fund is available to U.S.-based PNH patients for up to $800 in travel assistance per patient, per year, to see a PNH specialist or get a second opinion from a PNH specialist. Grantees will be permitted to travel with one companion utilizing funds from the grant. Grants will be awarded based on the thorough completion of the required application form…
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In this webinar, Dr. Taha Bat discusses research most relevant to patients reported over the past year on the biology and treatment on
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to…
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She was a sophomore in high school. Before she could try out for Cheer squad, she had to have a physical.
The routine Complete Blood Count revealed a problem.
Xinyi was then referred to a pediatric
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
. At the same time, she continued…
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In this webinar, Dr. Akriti Jain discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and AML. These studies were presented at the American Society of Hematology (ASH) 2024 meeting and their findings will be explained along with the potential impact of this research on understanding and treating MDS and AML. This is an advanced scientific…
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Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.
When he came home for the holidays, his mom, a veterinarian, suspected the rash could be
petechiae
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots…
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The AAMDSIF Patient Advisory Council (PAC) was created in 2008. Its purpose is to serve as a resource to the AAMDSIF staff in the development and review of patient education materials, programs and services. Members of the PAC include doctors, nurses, patient educators, patients and caregivers, all of whom have an interest in supporting the needs of people living with
aplastic anemia…
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I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong,…
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