News

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NHF is very pleased to announce that the Kevin Child Scholarship (KCS) application deadline has been set for August 2, 2021! The scholarship is named in tribute to Kevin Child, who died of AIDS in 1989, shortly before graduating from college. It is awarded annually to a student with hemophilia who is about to enter or currently enrolled in a program of higher education.  

Shared decision making (SDM), the concept by which patients and healthcare providers work closely together to arrive at personalized treatment-related decisions, can have significant positive impacts for individuals with hemophilia.

A new paper published in The Journal of Haemophilia Practice advances the concept of shared decision making (SDM) between the hemophilia patient and their healthcare provider (HCP).

A new article, “Emerging Immunogenicity and Genotoxicity Considerations of Adeno-Associated Virus Vector Gene Therapy for Hemophilia,” was published in the Journal of Clinical Medicine (JCM).



In this review, the authors discuss some of the primary considerations relevant to investigational gene therapies that employ adeno-associated viral (AAV) vectors, with particular focus on immunogenicity and genotoxicity – the former denotes the ability of a foreign substance to trigger an immune response, while the latter refers to a substances ability to damage genetic material.

FOR IMMEDIATE RELEASE

Media Contact

Ilana Ostrin

iostrin@hemophilia.org

212-328-3769

FOR PUBLIC COMMENT - JUNE 3, 2021

BioMarin recently reported key findings from preclinical studies of their investigational, gene therapy Roctavian (valoctocogene roxaparvovec), which was developed for the treatment of adults with severe hemophilia A. The findings were presented at the American Society of Gene & Cell Therapy (ASGCT) Virtual Meeting, which was held May 11-14, 2021.

The National Hemophilia Foundation (NHF) today, in conjunction with the American Kidney Fund (AKF), Arthritis Foundation, and American Autoimmune Related Diseases Association (AARDA), released findings from a new national online survey of patients and caregivers that illustrates the alarming challenges t

Important research using data from the My Life, Our Future (MLOF) Research Repository Phase One has been published in Frontiers in Medicine.

“Scholarship season” is now in full swing, time for an appointment reminder!

uniQure recently announced that their commercialization and license agreement with CSL Behring  for their investigational hemophilia B gene therapy was finally closed on May 5, 2021 – the agreement had been pending the completion of a series of antitrust reviews in the U.S., Australia, and the U.K.

Findings from a recently published study in the Journal of Anesthesia suggest that pregnant patients with hemophilia whose factor VIII or IX levels drop below 50% at the time of receiving neuraxial anesthesia are more likely to experience postpartum complications.

Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey. If you, or someone you care for, had contact with the HTC in 2020, they want to hear from you! You can take the survey online at www.htcsurvey.com, or fill out the paper survey you received in the mail. The survey closes on June 30, 2021.

NHF's Wednesday Webinars for May 2021 will focus on Women's Health Month,  featuring topics  of interest to both patients and healthcare providers who are interested in issues faced by women with inheritable blood disorders.

May Webinars

All webinars are from 2:00pm-3:00pm ET.

May 5, 2021

VWD Guidelines: Diagnoses

Speaker: Robert Sidonio, MD

 

May 12, 2021

uniQure recently announced that the U.S. Food and Drug Administration (FDA) has removed a clinical hold on their hemophilia B gene therapy program. The FDA had determined that uniQure satisfactorily addressed all issues raised by the agency that were related to a single patient diagnosed with hepatocellular carcinoma (HCC), a common form of liver cancer.

Kevin Mills, PhD has joined the National Hemophilia Foundation as chief scientific officer.

A graduate of University of Colorado Boulder, MIT, and Harvard Medical School, Dr. Mills will be responsible for overseeing NHF’s research strategy, including developing and expanding the foundation’s research capabilities, and setting research goals.

Dear NHF Family,

Like everyone else, I was closely following the trial and eventual verdict in the case of Derek Chauvin for the murder of George Floyd, and I know that many of you were anxiously awaiting as well. Mr. Floyd’s death was senseless and an ugly act of violence.

It was my hope that the jury would evaluate the facts and render a a fair verdict, and in turn, pave the way for greater accountability at all levels of our society, including law enforcement.

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.

April Webinars
All webinars are from 2:00pm-3:00pm ET.

April 7th, 2021
What is the Burden of Problem Joints with Hemophilia?

Speaker: Paul McLaughlin

April 14th, 2021
WFH Humanitarian Aid Program

Speaker: Assad Haffar

The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to reduce the cost of your premiums. Review your coverage now to make sure you are maximizing your benefits under the new law.

 

uniQure recently announced the results of a comprehensive investigation into a case of hepatocellular carcinoma (HCC) diagnosed in one patient participating in the phase III HOPE-B pivotal trial of etranacogene dezaparvovec, the company’s investigational gene therapy candidate for individuals with severe and moderately severe hemophilia B.

uniQure recently announced the results of a comprehensive investigation into a case of hepatocellular carcinoma (HCC) diagnosed in one patient participating in the phase III HOPE-B pivotal trial of etranacogene dezaparvovec, the company’s investigational gene therapy candidate for individuals with severe and moderately severe hemophilia B.

To the members of the inheritable blood disorders community,

Let me begin with a word for the thousands of members of our community – patients, providers, partners, family, and friends – who are also members of the Asian and Pacific Islander community:

We would not be the National Hemophilia Foundation without you.

As part of a patient education webinar series known as ITP INSIGHTSSM, the Platelet Disorder Support Association (PDSA) recently recorded a session on the new COVID-19 vaccines and immune thrombocytopenic purpura (ITP), a disorder characterized by low platelet levels.

The National Hemophilia Foundation (NHF) announced that Keri L. Norris, PhD, MPH, MCHES, has joined NHF as  vice president of health equity, diversity, and inclusion. Dr. Norris has more than 20 years of experience in health equity, public health, and social justice, with a particular emphasis on health disparities. Her role will be to create a health equity framework to integrate into NHF programs and services and develop culturally and linguistically appropriate programs and services to address disparities in outcomes within our community.

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