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PNH Experts Discuss: What's Next for PNH? Brief session at the 2022 Patient and Family Hybrid Conference

These three experts discuss new and upcoming treatments for 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. Hemoglobinuria means hemoglobin in the urine…
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Pediatric PNH - Diagnosis and Treatment

In this webinar, Dr. Satheesh Chonat will discuss what is PNH, how PNH is diagnosed and what treatment options are available to pediatric patients.  After the presentation, Dr. Chonat will answer questions from participants. Advance questions can be submitted to help@aamds.org. 
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Pediatric Parent Panel Discussion

This webinar features parents and guardians of pediatric patients who have been diagnosed with a 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…
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Parenting a Child with Bone Marrow Failure Disease - Summer 2021 Conference

When a child is diagnosed with a 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, often…
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PNH - 2022 San Antonio Patient &Family Virtual Conference

In this conference session, Dr. Anand Karnad, MD discusses best practices for treatment of PNH.
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Ocular GVHD - Diagnosis and Treatment

In this webinar, Dr. Sandeep Jain will discuss the diagnosis and treatment of ocular GvHD which occurs in 40-60% patients following an allogenic transplant. Ocular GVHD may lead to severe ocular surface disease, which can significantly diminish quality of life and restrict daily activities. He will answer questions from participants at the end of the presentation.
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Medicare Made Simple for Patients

Program participants will learn the basics of Medicare including how and when to enroll, the different parts of Medicare, the difference between Advantage and Supplement Supplement: see dietary supplement plans and what original Medicare does not cover, eligibility, how to avoid penalties, when to qualify for disability after a blood cancer diagnosis and which part covers infusion…
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MDS to AML - 2022 San Antonio Patient & Family Virtual Conference

In this conference session, Dr. Amer Zeidan, MD discusses understanding the management options for higher risk MDS, the evolution of MDS to AML and more.
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MDS/MPN Overlap - 2022 San Antonio Patient & Family Virtual Conference

In this conference session, Dr. Ruben Mesa, MD discusses the different features between MDS and MPN and their overlap syndromes.
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Managing Treatment Symptoms with Diet

In this webinar, Joanna Myers Casale, RD, CSO, discusses how the foods patients choose can help them cope with side effects, such as loss of appetite, nausea, vomiting, diarrhea, chewing and swallowing difficulties, and taste changes. The recording includes questions from attendees.  
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Living with PNH: A Review of Diagnosis, Complications, and Treatments

In this conference session, Dr. Patel discusses the review of a PNH diagnosis, complications, and treatments for the disease.  
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Management of Aplastic Anemia - 2022 San Antonio Patient &Family Virtual Conference

In this conference session, Dr. Elizabeth Cowhay Barnes discusses diagnosis and 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 to form. Anemia is a condition that happens when…
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Living with PNH: Patient Panel Discussion

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Living with PNH - from the 2022 Buffalo Patient and Family Hybrid Conference

This session features Dr. Bart Scott. He describes how PNH patients can live their best lives with treatments and disease management. Dr. Scott presented this session at the 2022 Buffalo Patient and Family Conference.
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Living with PNH: A Patient Panel Discussion

Patient panel discussions are a chance to meet some of the inspiring patients, caregivers and parents who are dealing with a 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…
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Living with MDS (Myelodysplastic Syndromes) - from 2022 Memphis Patient and Family Conference

In this conference session, Dr. Lai discusses how to manage MDS in adults such as how it impacts a patient's life, treatment options, and additional topics.
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Living with High-Risk MDS from 2022 Buffalo Patient and Family Hybrid Conference

Eunice Wang, MD of Roswell Park Comprehensive Cancer Center explains the challenges of living with High-Risk MDS during this recorded session.  Watch now for her presentation and the answers she gives to the attendees' questions.
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Living with Low-Risk MDS from the 2022 Buffalo Patient and Family Hybrid Conference

Amanda Przespolewski, DO, Roswell Park Comprehensive Cancer Center explains Low-Risk MDS challenges and treatments for patients.  Watch now to learn all about Low-Risk 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…
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Living with MDS: A Patient Panel

Patient panel discussions are a chance to meet some of the inspiring patients, caregivers and parents who are dealing with a 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…
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Living with GVHD: A Transplant Patient Panel Discussion

Patient panel discussions are a chance to meet some of the inspiring patients, caregivers and parents who are dealing with a 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…
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