Personalized Search
Displaying 301 - 320 of 1072
This study aims to capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients. As a participant, you will track what you're noticing about your health in the Folia Health app once per week for 6 months. You will use the Folia Health mobile app to enroll, consent, and complete all study activities. …
Clinical Trial last updated
.
In 2009, Daniel had a good job in accounting in Sydney, Australia. He had a structured, organized, healthy lifestyle. He had a devoted partner (whom he later married) and was studying for the Chartered Accountancy qualification. He rode his bike to work and played soccer. He was planning a good life ahead.One day at the office, the receptionist pinched his arm. The next day, he saw a huge welt in…
Patient Chronicle last updated
.
In this webinar, Dr. Akriti Jain discusses research most relevant to patients reported over the past year on the biology and treatment of Lower Risk MDS. These studies were presented at the American Society of Hematology (ASH) 2025 meeting, and their findings will be explained along with the potential impact of this research on understanding and treating Lower Risk MDS. This is an advanced…
Webinar last updated
.
In this webinar, Dr. Jayastu Senapati discusses the diagnosis of secondary AML from MDS, treatment options available to patients and symptom management. Questions were asked by the online audience, and Dr. Senapati answered them clearly.
Webinar last updated
.
AAMDSIF receives support from corporate partners who invest in advancing our mission. Thanks to their financial contributions, we are able to provide answers, support, and hope to patients, their families, and healthcare professionals entrusted with providing quality care.
AAMDSIF Corporate Partners provide financial and in-kind support of programming through sponsorships and grants.…
Basic page last updated
.
The 2025 Patient and Family Conference in Rockville, MD was held on March 8, 2025.Below are links to conference session recordings in full.
Conference Event last updated
.
In this recording, Dr. Bhumika Patel discusses what is new in PNH and current treatment options available to patients.
Webinar last updated
.
In this recording, Dr. Ball Brian discusses low risk MDS and current treatment options.
Webinar last updated
.
Debra shares both her experiences and how she maintained hope 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…
Webinar last updated
.
In this recording, Dr. Catherine Lai discusses MDS and how patients can also be diagnosed with MPN's. Her presentation discusses the treatment options available to patients and resources.
Webinar last updated
.
In this recording, Dr. Parveen Shiraz discusses transplant for MDS and potentials complications such as GVHD and treatment options.
Webinar last updated
.
In this recording, Dr. Philip Scheinberg discusses PNH complications that can impact a patient - extravascular
hemolysis
hemolysis:
(hi-MOL-uh-suss) The destruction of red blood cells.
, intravascular hemolysis,
Budd-Chiari Syndrome
Budd-Chiari Syndrome:
(bud-kee-AR-ee SIN-drome) A blood clot in the major vein that leaves the liver (hepatic vein). The liver and the spleen may…
Webinar last updated
.
In this recording, Dr. Phillip Scheinberg discusses
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…
and…
Webinar last updated
.
In this webinar, Dr. Amy DeZern discusses the latest in transplantation and GVHD for
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…
Webinar last updated
.
In January 2025, life felt full of momentum. My husband and I had just moved from Colorado to Tennessee to be closer to family. I was beginning my real estate career, we had just bought our first house, and we had our two precious daughters, just 2 years and 10 months old.I was working hard to get back in shape postpartum, but something felt off. I was getting weaker, more out of breath when I…
Patient Chronicle last updated
.
Lisa Barbarotta describes techniques to help manage low blood counts in this session.
Webinar last updated
.
Dr. Lourdes Mendez explains High-Risk MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell…
Webinar last updated
.
Charles Parker, MD, AB from Huntsman Cancer Institute explains various treatments for patients with PNH, or
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.…
Webinar last updated
.
Paul J Shami, MD of Huntsman Cancer Institute describes the types of therapies that may be used in treating MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means…
Webinar last updated
.
Srinivas Tantravahi, MBBS, MRCP (UK) of Huntsman Cancer Institute explains which non-transplant therapies may be considered for treatment of
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…
Webinar last updated
.