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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!


NHF Increases Financial Support of Chapters

NHF’s new grant program will help chapters during the COVID-19 pandemic.

NHF Opens Nominations for Board of Directors

Board chair Scott Miller calls for more diversity on the board.

Alex Borstein Brings Star Power to Raise Awareness of VWD

NHF and Takeda enlisted the Emmy-award winning actress to feature in a series of PSAs and resources.

A New Path Forward in Research

Leonard Valentino, MD lays groundwork for national research agenda in bleeding disorders.

In 2020, you might be wondering if being happy is something you could admit to—but even during challenging times, there are ways to boost your mood and try to celebrate the good things in life.

NHF’s 72nd Virtual Bleeding Disorders Conference: Provider Education for Physicians, Pharmacists, Nurses, Nurse Practitioners, and Social Workers is jointly provided by Postgraduate Institute for Medicine and the National Hemophilia Foundation.

Our distinguished faculty for this year's syposium will be reviewing the treatments currently available to manage bleeding in these patients and share significant advances being made to improve genetic diagnosis, including valuable insights on how to interpret rare platelet gene panels.

A team of researchers from the Royal College of Surgeons in Dublin sought to better understand the effect of congenital bleeding disorder-related restrictions on maternal and neonatal outcomes, including the rate of emergency Cesarean sections.

A team of researchers from the Royal College of Surgeons in Dublin sought to better understand the effect of congenital bleeding disorder-related restrictions on maternal and neonatal outcomes, including the rate of emergency Cesarean sections.

When it comes to living an altruistic life that can help make a difference for others, one of the most valuable things you can give your community is the gift of volunteering.

Stimate Recall: NHF and HFA Seek Answers

NHF and HFA have sent a joint letter requesting details on the circumstances surrounding the recall.

CSL Behring and Ferring Pharmaceuticals have announced a recall of lots of Stimate®.

Learn About Public Health and Blood Disorders at NHF's BDC

Two dynamic sessions will addres public health issues facing the wider blood disorders community.

The National Hemophilia Foundation is delighted to announce that it will be hosting a dynamic set of public health sessions as part of the upcoming Virtual Bleeding Disorders Conference (BDC). The product of an exciting collaboration between NHF and several national blood disorder advocacy organizations, these educational sessions will cover several key topics that have far reaching implications for our communities, including emerging, novel therapies, surveillance, and a myriad of public health-related subjects relevant to affected women and girls.

On average, a new habit takes approximately 30 days to develop, so don’t get discouraged if you struggle at first. Remain positive and focused on the goal.

COVID-19 WVF

NHF President and CEO Leonard Valentino, MD, discusses the role of von Willebrand factor (VWF) in severe cases of COVID-19.

The safety data presented at ISTH was based on an analysis of 193 study participants with hemophilia A and factor VIII inhibitors.

Spark's investigational hemophilia A gene therapy, administered via a one-time intravenous infusion, is designed to trigger the production of therapeutic levels of factor VIII via the liver cells.

Step out of your comfort zone, ask questions, get to know someone different than you. You might be surprised by how much this can enrich your life.

When mindful meditation becomes part of your daily routine, you’ll notice its benefits become a regular part of your life.

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.

There’s no doubt about it: the early bird does get the worm, and if you strive to live a more altruistic lifestyle, your morning routine should play an important role.

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

If you want to live a more altruistic lifestyle, start by reprogramming your brain to think more positively. Try out these six tips to focus your thoughts and train your brain to be more positive.

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.

Whether you’re in the business world or the nonprofit realm, communication is a critical component of moving things forward and accomplishing your goals.

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.

How can we celebrate this day while respecting and supporting different experiences? Today we’re going to talk about how to give Dad the gift of altruism this Father’s Day.

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.

If you’re looking for a way to get in shape and get involved in the community, we’ve got you covered. Here are five reasons to run for a charity this summer.

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.

Like any other muscle, a brain needs to be exercised, stretched and challenged to stay strong. Check out these cool tricks you can practice to exercise your brain and build mental muscle.

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.

Caring for animals is an important part of living an altruistic lifestyle. Today we explore how you can live more altruistically with the animals in your day-to-day life.

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.

If you try to live altruistically, then combating your own loneliness can play a vital role in how you serve others. Here’s how to fight loneliness while still regarding social distancing.

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.