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We’ve compiled a list just for you on last minute gift ideas that give back. Try some of these out to celebrate the holidays more altruistically this year.

In a recent press release Shire announced that they have entered into a collaboration agreement with Rani Therapeutics. This agreement allows Shire to conduct research on the use of Rani Pill™ technology for the oral delivery of factor VIII (FVIII) therapy for patients with hemophilia A. As part of the agreement, Shire obtains exclusive rights to conduct research on, evaluate, and pursue a worldwide, exclusive license for the development and commercialization of such a therapy.

Spark Therapeutics provided clinical trial updates on the company’s investigational gene therapies for hemophilia A and B, known respectively as SPK-8011 and SPK-9001. The updates were presented at the recent 59th American Society of Hematology (ASH) Annual Meeting and Exposition, which was held December 9-12, 2017 in Atlanta, GA.

NHF Healthcare Update: Congressional To-Do List

Congress has a lengthy to-do list before the end of the year.  NHF is closely monitoring numerous issues affecting the bleeding disorders community including:

Tax Reform

Do you want more opportunities to give to your community? We’ve compiled a list of holiday fundraiser ideas to get involved in yourself or along with other altruistic causes.

Results in HEMLIBRA® Study for Patients Without Inhibitors

Genentech recently reported results from the phase III HAVEN 3 study, which showed that the prophylactic use of HEMLIBRA® led to significantly reduced bleeds in adult and adolescent patients with hemophilia A, without inhibitors. The therapy was co-developed by Genentech, Chugai and Roche.

It's Not Too Late: Take Action on Tax Reform

 

 

NHF Announces the 2017 NHF/Novo Nordisk Career Development Award Recipient

NHF is pleased to announce Christopher J. Ng, MD, Assistant Professor of Pediatrics, University of Colorado Denver, as the recipient of the 2017 NHF/Novo Nordisk Career Development Award (CDA).

As we dive into the season of giving this month, let’s explore how the very action of giving can lead to a more altruistic life, improve our mood and even makes us happy.

The Partners in Bleeding Disorders Education Program recently launched “Psychosocial Considerations in Bleeding Disorder Care: Birth to Preadolescence.” This online learning activity is focused on the developmental and psychosocial issues unique to children with bleeding disorders, specifically those from infancy through preadolescence. The activity also encompasses the psychosocial considerations that may be seen in families of affected children.     

Action to Hope Study Open to Hemophilia Community

The study seeks to shed light on the barriers people with hemophilia who are obese or overweight have to losing weight.

The National Hemophilia Foundation (NHF) would like to make healthcare providers aware of three monographs that are available through NHF’s resource center HANDI. Each booklet is devoted to a key subject in bleeding disorders management, including the genetics of hemophilia, von Willebrand disease and inhibitors in hemophilia.

With Thanksgiving behind us and the winter holidays coming up, how can you make others feel warm during the cold season? We have some ideas to get you started.

Swedish Orphan Biovitrum (Sobi) recently announced the successful enrollment of the first hemophilia A patient in the company’s ReITIrate clinical trial. The phase 4 study, which is being sponsored by Sobi and Bioverativ Therapeutics, is designed to evaluate the use Eloctate™ for immune tolerance induction (ITI) therapy in hemophilia A patient with inhibitors. ITI is an effective approach to inhibitor eradication in which the body begins to tolerate a therapy after daily doses of factor are administered over time.

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to TRM-201 (rofecoxib), a class of COX-2 selective non-steroidal anti-inflammatory drug (NSAID) for the treatment of hemophilic arthropathy. Rofecoxib is manufactured by Cambridge, Massachusetts-based Tremeau Pharmaceuticals. A start-up company, Tremeau is focused on developing nonopioid pain treatments for rare diseases.

Gratitude is about more than taking a second to say “Thanks.” Gratitude shows true appreciation. This Thanksgiving, we have some ideas for how you can give gratitude.

FDA Approves SubQ Treatment for Hemophilia A with Inhibitors

The U.S. Food and Drug Administration (FDA) has approved HEMLIBRA® (emicizumab) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with factor VIII inhibitors.

Call to Action on Senate Tax Plan

Call your Senators now and share how the tax reform proposal will harm the bleeding disorders community.

THSNA Summit Coming in March 2018

Learn about the most current clinical and scientific issues related to hemostasis and thrombosis.

In a recent press release, Alnylam Pharmaceuticals announced that the company had achieved “alignment” with the U.S. Food and Drug Administration (FDA) on safety measures and risk mitigation strategies with an eye towards resuming clinical trials of the investigational therapy fitusiran. Alnylam is developing the therapy to treat patients with hemophilia A and B, both with and without inhibitors.

The history of hemophilia treatment is marked by an evolution that has ultimately led to increased life expectancy for persons with hemophilia. By 2050, 20% of the hemophilia population will be over 60 years of age. The increase in life expectancy among persons with hemophilia has been accompanied by the emergence of conditions related to aging in the hemophilia population.

How can you spread the cheer by giving back? We have five altruistic ideas for the holiday season that just might do the trick.

The National Hemophilia Foundation (NHF) is pleased to announce the 2017 Judith Graham Pool (JGP) Postdoctoral Research Fellowship award recipients: Esther Cooke, PhD, from the University of California San Diego, Satish Nandakumar, PhD of Boston Children’s Hospital, and Kasturi Pal, PhD, from The Scripps Research Institute in La Jolla, California.

New Educational Webinars for Healthcare Providers Outside Hematology

Primary care physicians, obstetrician/gynecologists, nurse/nurse practitioners, dentists, oral surgeons and other allied professionals are encouraged to take advantage of these excellent, accredited learning opportunities

The National Hemophilia Foundation (NHF) is pleased to announce Improving Outcomes for von Willebrand Disease and Other Bleeding Disorders in Non-Hematology Health Care Settings, a brand-new series of webinars designed to better educate healthcare providers who do not work in the field of hematology. The project is supported by independent educational grants from Shire and the Centers for Disease Control and Prevention.

 

Interim study results recently published online in the journal Haemophilia, showed that prophylactic use of ELOCTATE® led to joint health improvements in a group of hemophilia A patients. Manufactured by Bioverativ Inc., ELOCTATE®, is a recombinant factor VIII Fc fusion protein (rFVIIIFc) therapy designed to keep the infused clotting factor circulating in the body longer, stretching the time between infusions.

The U.S. Food and Drug Administration (FDA) has accepted the Biologics License Application (BLA) submitted by Bayer for BAY 94-9027, the company’s long-acting site-specific PEGylated recombinant factor VIII therapy for the treatment of hemophilia in adolescents and adults 12 years of age and over.

This month looks at the world through the eyes of a child, so today we look at how you can recognize National Child Safety and Protection Month, and keep the children in your life safe.

The U.S. Food and Drug Administration (FDA) recently granted “breakthrough” therapy designation for valoctocogene roxaparvovec (formerly BMN 270), an investigational hemophilia A gene therapy candidate developed by BioMarin Pharmaceuticals.

Tutors help students young and old to better their education, improve their skills and gain more success in a field of their choice. Why should you consider becoming a tutor?

The Partners in Bleeding Disorders Education Program recently launched “Clinical Management of Inhibitors Module 3: Immune Tolerance Induction (ITI),” the purpose of which is to sharpen clinical knowledge and skills relating to the nursing role in eradication of inhibitory antibodies to factor VIII and IX via ITI therapy.

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Shire’s SHP654, an investigational factor VIII (FVIII) gene therapy for the treatment of hemophilia A. The therapy was formerly known as BAX 888 – Shire changed the name to SHP654 when it acquired Baxalta in June 2016.

Joint Endorsement of Alexander-Murray

Four leading bleeding disorders organizations joint together to endorse the bipartisan Alexander-Murray Market Stabilization bill.

When a friend or family member gets sick, it’s difficult to see them lay in bed stifling their sniffles and running a fever. What can you do to make them feel better?

UniQure recently announced plans to “expeditiously advance” its investigational hemophilia B gene therapy AMT-061 into a pivotal study in 2018. The announcement followed meetings the company had with both the U.S. Food and Drug Administration (FDA) and the European Medicines Agency.

Study Finds New Information on FVIII Inhibitors

Researchers have made an important discovery that could change the way doctors understand and treat inhibitor development in hemophilia A

Actions from the President adds uncertainty to the health insurnace market.

Halloween can be even more meaningful this year by promoting an altruistic lifestyle and giving back to your community. Check out these 13 spooky Halloween fundraising ideas.

The National Hemophilia Foundation is pleased to announce that Michael Kuklish of Lillian, Alabama, is the recipient of the 2017 Kevin Child Scholarship. 

Honoring George McCoy

A celebration of life for George McCoy will be held in Cary, North Carolina, on November 12th.

Focusing on positive thoughts can actually impact your overall health. How, you ask? Today we dive in and see how positive thoughts can make you healthier.

New Educational Activity for Hemophilia Providers Available

This activity discusses the latest advances in the management of hemophilia.

October happens to be Adopt a Shelter Dog Month. So, how can you celebrate this month and support another incredible cause? We have some cool canine concepts.

NHF is working with the HTC in Puerto Rico to coordinate aid to people with bleeding disorders.

San Francisco-based Catalyst Biosciences, Inc. recently announced positive clinical data from the first group of patients participating in an ongoing Phase 1/2 proof-of-concept study in individuals with severe hemophilia B. The trial, which is being conducted at three centers in South Korea, is designed to evaluate Catalyst’s investigative, subcutaneous factor IX (FIX) therapy known as CB 2679d. Catalyst develops its therapies using engineered proteases, enzymes that increase the rate of chemical reactions within cells.

It can be difficult to decide how to give, what you can give or even where to give to. Today let's take a closer look at how to donate with a purpose to disaster relief.

NHF Research Recognized by US Specialty Pharmacists

The findings showed the value of collaboration between HTCs, insurers, and speciality pharmacies.

The mission of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) study is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care. PROBE aims to develop a new global tool to enhance the direct patient-voice in health care decision-making. The study has partners in both developed and developing countries.

Members of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) recently gathered during NHF’s 69th Annual Meeting on August 26, 2017 in Chicago. The meeting generated three new documents related to treatment, therapies, women with bleeding disorders, carriers and emergency room management. These documents, which are listed below, were subsequently adopted by NHF’s Board of Directors on September 17, 2017.

Your Access to Healthcare is at Risk!

Call your Senator and ask them to vote NO on the Graham-Cassidy bill, which would jeopardize access to healthcare for people with bleeding disorders.