Patient and Family Webinars

Paul J Shami, MD of Huntsman Cancer Institute describes the types of therapies that may be used in treating MDS, or Myelodysplastic Syndromes that do not include a bone marrow transplant.

Charles Parker, MD, AB from Huntsman Cancer Institute explains various treatments for patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria, in this session. Dr. Parker explains why particular therapies are preferred as options for therapies continue to advance.

Sagar Patel, MD, Huntsman Cancer Institute, explains this post-transplant condition and its treatments. Watch to learn more about techniques used to prevent GVHD as well as short-term and long-term complications.

Suneet Agarwal, MD, PhD, from Boston Children's Hospital answered parents' questions in this session from the Patient and Family Conference in Salt Lake City, Utah. Find the answers to your most pressing question in this recording.

Watch this informative patient panel from the 2023 Patient and Family Conference in Salt Lake City, Utah. This session was led by Jill Gahlsford, RN, of Huntsman Cancer Institute.

Michael Pulsipher, MD, Primary Children's Hospital, explains the details of bone marrow transplant for aplastic anemia in this presentation. He explains how doctors determine when to recommend a transplant and the method of treatment.

Ryotaro Nakamura, MD, City Of Hope, explains the reasons why the specialist may recommend a bone marrow transplant for a patient with MDS. The recording includes questions from the audience.

Suneet Agarwal, MD, PhD from Boston's Children's Hospital provides essential information for families about inherited bone marrow failure disorders in this session from the Patient and Family Conference in Salt Lake City, UT, 2023

In this webinar, Dr. Gail Roboz discusses the Molecular International Prognostic Scoring System (IPSS-M) which is a newly developed risk stratification model for myelodysplastic syndromes (MDS) that expands on the original IPSS-R by including data on somatic oncogenic mutations across 31 gene families and weighing their impact on prognosis and outcomes.  

Dr. Emma Groarke discusses research most relevant to patients reported over the past year on the biology and treatment on Aplastic Anemia and PNH. These studies were presented at the American Society of Hematology (ASH) 2022 meeting and their findings will be explained along with the potential impact of this research on understanding and treating aplastic anemia and PNH. This is an advanced scientific presentation. The final question and answer section is included in the recording.

Dr. Salman Fazal will gives a brief AML overview and then answers questions from participants. The question and answer session is recorded here.

High Risk MDS Non-Transplant Therapies Current Therapies and Clinical Trials with Dr. Prajwal Dhakal

Learn how to manage your PNH, or paroxysmal nocturnal hemoglobinuria,  symptoms and complications with the instruction from this session of the 2023 Omaha Patient and Family Hybrid Conference.

This session explains why and how patients may be offered a transplant to treat MDS, or myelodysplastic syndromes, or severe aplastic anemia. Dr. Gundabolu also answers questions from the live audience.

Dr. Vijaya Bhatt discusses Low-Risk MDS in accessible terminology during this session from the 2023 Omaha, NE, Patient and Family Hybrid Conference.

Watch this session to learn techniques for coping after the diagnosis of a bone marrow failure disease such as aplastic anemia, MDS, or PNH.  The session is useful for all bone marrow failure disease patients.

From the 2023 Omaha Patient and Family Hybrid Conference: PNH Non-Transplant Therapies with Dr. Alex Nester. Learn symptom management and options for therapies in this session which includes questions from the audience.

The patient panel discusses this essential topic: Barriers and Challenges to accessing care.  Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.