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The Global PNH Patient Registry is a collaborative effort between the
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…
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Geordy’s youth was an active one. Baseball, Soccer, and Hockey filled his days, even competing in the Little League World Series!
He was active in his family’s church, too. When offered the opportunity to go on a Youth with a Mission (YWAM) program to Australia, he traveled from his home in British Columbia to participate. Once there, the spark of ministry became a calling, so…
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In this webinar, Dr. Jan Bewersdorf discusses the latest research presented at EHA and ASCO on MDS and AML. This is an advanced presentation.
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In this webinar, Dr. Phillip Scheinberg will discuss the latest research presented at EHA about
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…
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In this webinar, Dr. Jorg Dietrich will discusses the diagnosis of brain fog/chemo brain and how patients can manage this symptom of disease and its treatments.
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We help you cope with your battle against
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
disease…
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Here are the session recordings and the presentations for the 2023 Omaha Patient and Family Hybrid Conference.
Aplastic Anemia Non-Transplant Therapies and Clinical Trials, from Omaha Patient and Family Hybrid Conference 2023
High Risk MDS Non-Transplant Therapies Current Therapies and Clinical Trials Omaha Patient and Family Hybrid Conference 2023
Low-Risk MDS (Myelodysplastic…
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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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The purpose of this study is to better understand the treatment journey and experiences of people living with
Paroxysmal Nocturnal Hemoglobinuria
Paroxysmal Nocturnal Hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night.…
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This is a Phase II study of hematopoietic stem cell transplantation for previously untreated patients with severe
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…
Clinical Trial last updated
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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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