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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!


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.

Meditation is powerful. If you’re still unsure whether or not the practice is worth trying, check out these top benefits of meditation and consider how they can help improve your life.

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.

When bad things happen, how do we act individually, and how can we come together as a society? How can we be kind in times of darkness?

Idaho Chapter community members share their story/journey with a bleeding disorder. Please listen/read/watch these stories. If you are interested in sharing your story, in whatever expressive way you choose, contact us - idaho@hemophilia.org

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.

The halted trials were investigating concizumab prophylaxis treatment in hemophilia A and B patients regardless of inhibitor status.

NHF will update this page as more statements about product supply becomes available.

Whether it’s a few hours or a long commitment, volunteering not only supports those around you but positively influences you as well.

Statement from Len Valentino on COVID-19

A statement from Dr. Valentino addressing the concerns of the community regarding the rapidly evolving COVID-19 situation.

2020 NYC Half Marathon Cancelled

The 2020 United Airlines Half Marathon has been cancelled due to concerns over transmission of COVID-19.

NHF Office Response to COVID-19

Due to the recommendations of local government, NHF's New York City staff will be working remotely until further notice. We will continue to work to serve the bleeding disorders community during this time.

Living a full and altruistic life is about more than just doing your best. It’s about sharing your best with others around you and connecting with them through our inherent need to tell stories.

Takeda Responds to HFA-NHF Letter on VONVENDI Recall

Takeda responded to the HFA-NHF letter late yesterday regarding the recall of two lots of VONVENDI von Willebrand factor.

NHF Letter to the Community on COVID-19

The National Hemophilia Foundation will continue to monitor the rapidly changing situation regarding COVID-19 and provide regular updates to our community.

XINITY® is currently indicated for the control and prevention of bleeding episodes and for perioperative management in adults and children, 12 years of age or older, with hemophilia B.

More than 400 people affected by bleeding disorders asked their legislators to take action on the Hemophilia SNF Access Act

MASAC Letter to the Community Regarding the Coronavirus Disease 2019 (COVID-19)

We will provide updated guidance if new information has implication for the bleeding disorders community.

Did you know you can give back by supporting small businesses? Here are some hows, whys and benefits of supporting small businesses for your altruistic lifestyle.

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

On February 28th, Genentech released a statement relating to the supply of Hemlibra as it relates to 2019-nCoV (novel coronavirus).

Joint Statement on Recall of VONVENDI Lots

On February 27th, HFA and NHF submitted a letter to Takeda focusing on preliminary questions regarding the recall.

Bayer Releases New Statement onf Kogenate Recall

HFA and NHF recognize that recalls can be unsettling for many in the bleeding disorders community. We are in communications with Takeda to obtain additional detailed and timely information.

If you want your child to start on the right path, help them get involved in their community and start volunteering today.

This is a six-part activity designed to increase healthcare providers' knowledge of the treatment of hemophilia.

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.