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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!


Letter to the NHF Community

Collaboration will unlock our potential and define our success.

If you’re still not sure what you’re doing over spring break, check out these ideas for how you can have fun and give back.

NHF Announces 2020 Physical Therapy Excellence Fellowship

The Physical Therapy Excellence Fellowship is meant to provide support PTs interested in conducting research or clinical projects related to the care of patients with hemophilia.

This resource was created to provide much needed guidance to emergency department personnel who may encounter patients presenting with a bleeding disorder.

How FDA is Putting the Patient Voice at the Forefront of Gene Therapy Clinical Trials for Hemophilia

The impact of an FDA "Listening Session" on gene therapy for hemophilia.

Novo Nordisk Announces Launch of New Factor VIII Therapy

ESPEROCT® is a long-acting recombinant product for the treatment of hemophilia A.

You can give the most lovely Valentine’s Day gift by giving back to your community. Check out 14 altruistic ways to celebrate this special day.

NHF Awarded 4-star Rating from Charity Navigator

NHF maintains its prestigious 4-star rating from Charity Navigator, the largest independent charity evaluator in the US.

NHF, WFH, EHC Monitor Coronavirus Impact on Bleeding Disorders Community

The organizations continue to monitor the outbreak.

Don’t let winter get you down. Resist seasonal affective disorder with five tips to stay positive during the coldest season.

The new guidance issued by the U.S. Food and Drug Administration seeks to support both innovation and patient safety by providing an important regulatory framework for developers of investigational gene therapies.

NHF and HFA Hold Safety Summity

The summit was convened to address recent issues regarding recalls and product safety.

coreHem Mental Health

The Green Park Collaborative and the National Hemophilia Foundation launch project to develop a PROM to measure mental health outlook.

Our words are powerful and should be handled with respect. Because they can impact others, choose yours wisely with these helpful tips.

Study Looks at Postpartum Hemorrhage in Type 3 VWD

This study was based on a systematic literature review of peer-reviewed articles relevant to VWD and pregnancy, published between January 1982 and May 2019.

How can we be kind in times of darkness? Today we’re going to talk about just that, and how we can continue to live altruistically when facing heart-wrenching times.

Dr. Leonard A. Valentino will be the foundation’s next President & Chief Executive Officer

Nationally recognized researcher Dr. Leonard Valentino to lead the Foundation into the future.

Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case

Groups argue patients need a quick resolution to ensure access to care.

The group of patients who participated in this study were teenagers living with hemophilia A and B, who averaged 16 years of age.

Self-defeating thoughts can come when we least expect them and tear down our self-esteem and break our spirits. Stand up to them and choose joy instead with five ways to overcome self-defeating thoughts.

Medscape Launches Activity for Emergency Department Providers

The activity is intended for emergency medicine physicians, hematologists, pediatricians, nurses, and other healthcare professionals who manage patients with hemophilia.

On December 23rd, the BioMarin submitted a Biologics License Application for valoctocogene roxaparvovec to the U.S. Food and Drug Administration.

 

Sangamo transferred the investigational new drug application for their hemophilia A gene therapy candidate to Pfizer, which will now lead its phase 3 clinical development.

NHF's Excellence Fellowships support projects in the areas of nursing, social work, and physical therapy.

It’s out with the old and in with the new, and we’re ready to say hello to bright beginnings in 2020.

The goals of this activity are to increase clinician awareness of the latest data and advances in the development of gene therapy approaches for the treatment of hemophilia, as well as to increase clinicians' ability to critically evaluate key considerations for incorporating gene therapy strategies into patient care

A mentorship program has more in store than just for the mentee. If you’re not sure whether mentoring is right for you, take a look at these eight ways becoming a mentor can benefit you.

While the gifts in “The Twelve Days of Christmas” may be a little strange by today’s standards, you can still celebrate by giving gifts in your community. Check out this unique spin on 12 ways you can show you care this holiday season.

Court Rules Against ACA Individual Mandate

US Court of Appeals for the Fifth Circuit rules on a key component of the Affordable Care Act, declaring that without a tax penalty, the individual mandate that most Americans have health insurance is unconstitutional.

Regulators Clear Roche Deal to Acquire Spark

Roche is poised to aquire Spark Therapeutics and it's hemophilia A gene therapy portfolio for $4.3 billion.

The findings of this study suggest that women with mild factor XI deficiency are more at risk for postpartum hemorrhage after a cesarean delivery, when compared to a control group.

Making a new, healthy habit that sticks can be pretty difficult. If you want to begin a habit that you can actually stick with, check out these useful tips.

The U.S. Food and Drug Administration first approved Jivi® in August 2018 for the treatment of hemophilia A in adolescents and adults 12 years of age and over, including for prophylactic, on-demand and perioperative management of bleeding.

This “Notice of Intent” is being released now by NHLBI to provide eligible applicants ample time to develop competitive applications for submission in 2020.

NHF’s Dawn Rotellini Elected to WFH Board of Directors

The appointment is effecitve as of December 5, 2019.

Sangamo and Pfizer Announce Progress in Gene Therapy Trial at ASH

Pfizer and Sangamo presented their gene therapy updates in a poster presentation during the 61st Annual Meeting of the American Society of Hematology in Orlando, Florida.

Singing with others has numerous health benefits for your body and mind. Here are a few ways to be healthier and happier with music in your life.

These educational activities are designed specifically for healthcare providers who may be new to this field or who function outside the hemophilia treatment center network, including primary care physicians, obstetrician/gynecologists, nurse/nurse practitioners, dentists, oral surgeons and other allied professionals.

Guildelines on Emergency Department Management Approved

This document provides critical guidance for when emergency department personnel   encounter a patient with hemophilia or other bleeding disorder. 

This document provides critical guidance for when emergency department personnel   encounter a patient with hemophilia or other bleeding disorder. 

NHF and HFA Announce Safety Summity in January

HFA and NHF have responded to our community’s needs and assembled a Safety Summit to be held in January of 2020.

Mixed-breed dogs offer genuine companionship as well as several other benefits that could make them a perfect fit for your family.

With a little out-of-the-box thinking, you can give back in ways that meet the unique needs of your community and are fulfilling to everyone you encounter.

On November 30, support your local businesses and discover hidden gems in your town.

UniQure Announces Interim Hemophilia B Gene Therapy Trial Data

The therapy is for patients with severe and moderately severe hemophilia B.

Cooking up a homemade meal can be nourishing for the mind, body and soul. Read on to discover how cooking makes people happier and more connected.

Two Gene Therapy Medscape Acitivities Recertified

These activities are the product of a collaboration between Medscape, NHF, the European Haemophilia Consortium and the World Federation of Hemophilia.

Study Will Examine Brain Development in Young People with Hemophilia

This new study will investigate if new therapies have resulted in better outcomes related to brain function in young hemophilia patients.

Red Tie Runners team

The first team to run in the TCS New York City Marathon on behalf of NHF is an inspiration to all people with bleeding disorders.

November is a wonderful time to recognize your blessings and give thanks for them.