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If you want to be in the know about what’s going on at our organization, you’ve come to the right place!

Be sure to check back regularly to get our latest news updates.


Anger Happens: Coping During COVID-19

Christi Humphrey, LCSW of Hemophilia of Georgia and Jhon Velasco, MA of NHF discuss the principles of anger and how it works in/through the body.

Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder

NHF has learned of the recent death of a patient who had been participating in a gene therapy clinical trial for a rare muscle disorder known as X-Linked Myotubular Myopathy.

Pending regulatory clearance, CSL Behring would acquire exclusive global license rights from uniQure to commercialize etranacogene dezaparvovec, otherwise known as AMT-061. 

The factor product donation made by the two companies is in support of the World Federation of Hemophilia's Humanitarian Aid Program.

Healthcare providers who complete the activity will learn about the important role of log-keeping for the home treatment of hemophilia patients and much more.
Pain Management: Coping During COVID-19

This webinar will cover pain in the bleeding disorder community in the context of the COVID pandemic.

These activities are designed for clinical staff including nurses, social workers, physical therapists, pharmacists, and other multidisciplinary providers involved in the management of persons with hemophilia receiving care in the federally recognized U.S. HTC network.

COVID-19 Assistance Programs

Many of the charitable organizations you may be familiar also have COVID-19 specific funds.

The updated trial data from BioMarin have been submitted as a late-breaking abstract to the upcoming World Federation of Hemophilia (WFH) Virtual Summit to be held June 14-19, 2020.

We Stand With You

Discrimination is the greatest threat to a community built on belonging and acceptance. We are committed to being part of the solution.

COVID-19 Webinars and Newsletter Update

NHF will continue to provide information and resources to the bleeding disorder community on the COVID-19 pandemic.

Inhibitors: Coping During COVID-19

In this webinar, Drs. Tammuella Singleton and Tyler Buckner explain what you need to know, and what precautions you need to take if you have hemophilia with an inhibitor.

These continuing education activities are intended for hematologists, pediatricians, and other healthcare professionals who manage patients with hemophilia.

These continuing education activities are intended for hematologists, pediatricians, nurses, nurse practitioners, and other healthcare professionals who treat patients with hemophilia.

Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

The authors of this paper assert that an updated treatment model is needed globally for people with hemophilia, one that strives for health equity by aligning with the promising treatment landscape of the 21s century.
Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

A team of physicians and pharmacists analyzed factor dosing of hemophilia patients at the emergency department of Nationwide Children’s Hospital, targeting out-of-range and optimal dosing data and subsequent educational interventions.

Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

A team of physicians and pharmacists analyzed factor dosing of hemophilia patients at the emergency department of Nationwide Children’s Hospital, targeting out-of-range and optimal dosing data and subsequent educational interventions.

Statement from Novo Nordisk on Rebinyn and COVID-19

BioMarin is working with health authorities and governmental regulatory agencies globally, to ensure the safety of all those involved in their clinical trial program, including enrolled participants, investigators, and staff.

Health and Wellness Update #9 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

NHF's Board of Directors Meeting

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Thursday, May 28th at 7:00 PM EDT.

Researchers for this observational study focused on macroscopic hematuria, hemophilia, and potential links to family history of hypertension. 

 

Letter to the NHF Community

Many questions and concerns exist in our community and NHF is here to help you navigate the complexities of the pandemic.

Ask the Experts: Coping During COVID-19

This webinar covers updates on how the COVID-19 pandemic is affecting the bleeding disorders community and what people with bleeding disorders need to know about the coronavirus.

BDC 2020 Updates and Transition to Virtual

Important updates regarding NHF's 72nd Bleeding Disorders Conference.

Health and Wellness Update #7 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

NHF and HFA Hold Safety Summity

The executive summary of the NHF/HFA Safety Summit is available for public commentary.

Playing It Safe: Coping During COVID-19

Many of us are looking for new ways to stay active during the COVID-19 pandemic, but it’s important to find an activity that works for you and your bleeding disorder.

Staying Active: Coping During COVID-19

Experts gathered to discuss strategies to keep physically active and the importance of physical activity for people with bleeding disorders in this town hall webinar.

NHF Advocacy Efforts Related to COVID-19

NHF has been advocating on many issues that affect the bleeding disorders community during the COVID-19 pandemic.

How Your Plasma Could Lead to a Potential Treatment for COVID-19

When you donate your plasma, you become the essential first step in a journey to develop a potential treatment for COVID-19. Learn how from the CoVIg-19 Plasma Alliance.

Health and Wellness Update #6 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

Voluntary Recall Notice for BD PosiFlush™ SF Saline Flush Syringes

BD is conducting a voluntary medical device recall for multiple lots of the BD PosiFlush SF (Sterile Field) Saline Flush Syringe 10mL.

The CDC is interested in hearing from patients with acute or chronic pain, patients’ family members and/or caregivers, and health care providers who care for patients with pain or conditions that can complicate pain management such as opioid use disorder or overdose.  

Register for Staying Active: Coping During COVID-19

Join us on Friday, April 24th for NHF's next townhall webinar: Staying Active: Coping During COVID-19.

Stress & Anxiety: Coping with COVID-19

On April 17th, experts from NHF answered your questions on how best to deal with stress in this townhall webinar: Stress & Anxiety: Coping with COVID-19.

BioMarin is working with health authorities and governmental regulatory agencies globally, to ensure the safety of all those involved in their clinical trial program, including enrolled participants, investigators, and staff.

Health and Wellness Update #5 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

Octapharma’s Wilate® Receives Expanded Approval from FDA

Hemlibra® is known to interfere with certain laboratory assays used to measure blood coagulation.

On April 10th, experts discussed what is involved in a telemedicine visit and provided a look at what is needed for a successful telemedicine visit.

NHF will update this page as more statements become available.

Industry Forms Alliance to Develop Potential Treatment for Patients with Serious COVID-19 Complicati

Developing such a treatment would necessitate plasma donations from many people who have fully recovered from COVID-19, and whose blood contains antibodies that can fight the coronavirus.

Comment Period for VWD Clinical Practice Guidelines Open

NHF is seeking comments on draft ASH ISTH NHF WHF clinical practice guidelines on VWD Diagnosis & Management.

APLUS Statement on FDA Policy Changes Related to Blood and Plasma Donation

NHF and HFA are members of the American Plasma Users Coalition.

The FDA approval is for the treatment and control of bleeding episodes occurring in adults and adolescents 12 years of age and older with hemophilia A or B with inhibitors.

What you need to know about access to HTCs

Supplemental MASAC Statement Regarding Home Delivery and Refill Under State of Emergency Declaration

Having an adequate supply of treatment products at home is critical to achieve safe patient care and continuity of treatment.

Town Hall Webinar - Insurance: Coping During COVID-19

On March 27th, experts from NHF answered your questions regarding changes in insurance in our townhall webinar: Insurance: Coping During COVID-19.

MASAC's latest set of recommendations cover the use and management of emicizumab, the latest products licensed to treat bleeding disorders, integrating the CDC's opioid prescribing guidelines into bleeding disorders care, and bleeding prophylaxis for patients undergoing gastrointestinal endoscopies. 

Dr. Valentino's COVID-19 Town Hall Webinar

On March 20th, NHF’s President and CEO answered your questions about how COVID-19 affects our community.

Health and Wellness Update from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

NHF-HFA insurance question logo

Do you have questions regarding insurance coverage in light of the COVID-19 pandemic? We're here to help.