NHF's Wednesday Webinars for April 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.
All webinars are from 2:00pm-3:00pm ET.
April 7th, 2021
What is the Burden of Problem Joints with Hemophilia?
Speaker: Paul McLaughlin
This webinar will focus on the impact of arthopathy on people with bleeding disorders, including defining a target joint va a problem joint; what makes a joint ‘problematic’ and is it the same for everyone; what is understood about the emotional, psychological and physical impact of living with a problem joint, and how can people with hemophilia work with their healthcare team to decrease the burden of a problem joint. This webinar is appropriate for physical therapists, other members of the healthcare team, and people with bleeding disorders.
April 14th, 2021
WFH Humanitarian Aid Program
Speaker: Assad Haffar, Director, Humanitarian Aid, World Federation of Hemophilia
Everyone in the bleeding disorders community can make a difference. Assad E. Haffar, MD, MSc will discuss the WFH Humanitarian Aid Program, including an overview of the program, its history and expansion, how it helps people with bleeding disorders in the developing world, its challenges during the global pandemic, and how the bleeding disorders community can help WFH in its efforts. This webinar is for anyone who is interested in learning more about this important program.
April 21, 2021
WFH Gene Therapy Registry
Speakers: Glenn Pierce, MD, PhD, Vice President, Medical, WFH and Donna Coffin, MSc, Head of Research, WFH
This webinar will detail the goals and objectives of the World Federation of Hemophilia's Gene Therapy Registry. The registry aims collect long-term data on all people with hemophilia who receive gene therapy, worldwide. The primary objective of the registry is to determine the long-term safety of FVIII and FIX gene therapies in people with hemophilia, and also to determine the long-term efficacy and durability of FVIII and FIX gene therapies in people with hemophilia; and to assess long-term quality of life (EQ-5D-5L) and burden of disease (PROBE) post gene therapy infusion. This webinar is for hematologists, researchers, and others interested in gene therapy research.
April 28, 2021
HTC Patient Satisfaction Survey
Speakers: Judith R. Baker, DrPH, MHSA; Brenda Riske, MS, MBA, MPA
This webinar will discuss the importance of a U.S. HTC Patient Satisfaction Survey, share key results from surveys conducted in 2014 and 2017, and explain how and why patients/caregivers can complete the 3rd national survey. This webinar is appropriate for all members of the bleeding disorders community.