living with disease

Low Risk MDS from the 2025 Boston Patient and Family Conference

Topic(s)

Myelodysplastic Syndromes (MDS)

Presenter(s)

Andrew Brunner

In this recording, Dr. Andrew Brunner discusses the diagnosis of low risk MDS overlap and the treatment options available to patients.

Patient Education Strategies for Patients with Bone Marrow Failure

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Topic(s)

Related Bone Marrow Failure Diseases and Malignancies

Bone marrow failure disorders are challenging to understand and explain. It can be overwhelming to be diagnosed with a rare disease like aplastic anemia, MDS or PNH, so it’s important for patients to learn about their disease, treatment options, and support for their journey…

Finding His Way Through: Evan’s Story of PNH

Original Publication Date

September 14, 2025

Article Source

External Web Content

Meet Evan. In a recent conversation with the Aplastic Anemia and MDS International Foundation, he shared his journey from paroxysmal nocturnal hemoglobinuria (PNH) diagnosis through treatment and survival. Evan, please tell us a little about yourself. I’m 31 years old. I’m based…

Outcomes and Patterns of Relapse of NPM1 Mutated Acute Myeloid Leukemia Treated With Venetoclax Based Therapies

Original Publication Date

August 28, 2025

Article Source

External Web Content

To the editor, Mutations in nucleophosmin 1 (NPM1-mut) are detected in approximately 30% of newly diagnosed (ND) acute myeloid leukemia (AML), and are considered founder events due to their persistence at relapse [1]. While treatment with both intensive chemotherapy (IC) and low…

Understanding Brain Fog, Chemo Brain, with Dr. Jorg Dietrich

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Topic(s)

Living Well with Bone Marrow Failure

Managing Your Treatment

Presenter(s)

Jorg Dietrich, MD, PhD

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.

Advances in Transplant and GVHD with Dr. Corey Cutler

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Topic(s)

Bone Marrow Transplant

Presenter(s)

Corey Cutler, MD, MPH, FRCPC

In this webinar, Dr. Corey Cutler discusses advances in transplant and treating GVHD, or Graft Versus Host Disease.

Managing PNH Complications Webinar

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Topic(s)

Paroxysmal Nocturnal Hemoglobinuria (PNH)

Presenter(s)

Srinivasa Reddy Sanikommu, MD

In this webinar, Dr. Srinivasa Sanikommu discusses the management of PNH and complications experienced by patients.

What is PNH? Webinar

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Topic(s)

Paroxysmal Nocturnal Hemoglobinuria (PNH)

Presenter(s)

Srinivasa Reddy Sanikommu, MD

In this webinar, Dr. Srinivasa Sanikommu discusses the diagnosis of PNH and current treatments available to patients.

Age-dependent phenotypic and molecular evolution of pediatric MDS arising from GATA2 deficiency

Original Publication Date

July 15, 2025

Article Source

External Web Content

Abstract GATA2 deficiency is an autosomal dominant transcriptopathy disorder with high risk for myelodysplastic syndrome (MDS). To elucidate genotype-phenotype associations and identify new genetic risk factors for MDS, we analyzed 218 individuals with germline heterozygous GATA2…

Market Research Study Market Research Study: Market research study is conducted to understand the patient population by gathering information from patients about their experience with types of treatment, awareness of therapeutic options, resources for making informed decisions, and health care providers and services. This type of research can provide insights that may inform product development, improve patient care, and identify unmet needs of patients. Understanding the Paroxysmal Nocturnal Hemoglobinuria Journey

Status

Recruiting

Study Date (Range)

September 2, 2025 - September 2, 2026

Bone Marrow Disease(s)

Paroxysmal Nocturnal Hemoglobinuria (PNH)

Age Group

21 years and older

The purpose of this study is to better understand the treatment journey and experiences of people living with Paroxysmal Nocturnal Hemoglobinuria (PNH), specifically those currently in a “watch and wait” period after being diagnosed.

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living with disease

Low Risk MDS from the 2025 Boston Patient and Family Conference

Patient Education Strategies for Patients with Bone Marrow Failure

Finding His Way Through: Evan’s Story of PNH

Outcomes and Patterns of Relapse of NPM1 Mutated Acute Myeloid Leukemia Treated With Venetoclax Based Therapies

Understanding Brain Fog, Chemo Brain, with Dr. Jorg Dietrich

Advances in Transplant and GVHD with Dr. Corey Cutler

Managing PNH Complications Webinar

What is PNH? Webinar

Age-dependent phenotypic and molecular evolution of pediatric MDS arising from GATA2 deficiency

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