If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
There’s no doubt about it: If you want to live a more knowledgeable, cultural and altruistic lifestyle, then learning another language has big benefits in store.
Answering Your Questions on the Proposed Change to the FDA's Blood Donation Policy
Akron Pharmaceuticals, one of several companies that manufactures and markets the product aminocaproic acid, recently filed for chapter 7 bankruptcy and subsequently closed.
Researchers from the Children’s Healthcare of Atlanta and Emory University recently published the results of a small study investigating the subject of guilt in mothers of children with hemophilia (CWH).
March 15, 2023 – The National Hemophilia Foundation (NHF) today announced that a series of manuscripts central to advancing patient-focused research for the inherited bleeding disorders (IBD) community have been published in the journal Expert Review of Hematology. These papers describe initial recommendations from six multi-disciplinary working groups established to evaluate and address the most urgent priorities for the community, and will form the basis for NHF’s community-driven National Research Blueprint (NRB).
Spring is fast approaching, which means it’s time to talk scholarships!
This Bleeding Disorders Awareness Month, hematologists Ronak Mistry, DO and Dan Hausrath, MD start a conversation around their experiences being early career physicians, and launching a podcast. Watch their video and read a transcript.
Learn more about Bleeding Disorders Awareness Month here.
Biomedical and pharmaceutical companies who intend to bring a product to market must demonstrate safety and efficacy of those products via closely monitored preclinical and clinical studies.
If you strive to live a good life in all areas, journaling might be the next step to consider. Take a look at simple ways journaling can improve your life.
On March 6th BioMarin announced that it received a notice from the U.S. Food and Drug Administration (FDA) indicating that the agency has extended their review of the company’s Biologics License Application for ROCTAVIAN™ (valoctocogene roxaparvovec).
[NOTE: As part of NHF’s Bleeding Disorders Awareness Campaign, NHF CEO Dr. Len Valentino has invited community members and medical professionals to “start the conversation” on gene therapy. The opinions shared in these pieces do not necessarily reflect the views of the foundation.]
By Ray Stanhope
[NOTE: As part of NHF’s Bleeding Disorders Awareness Campaign, NHF CEO Dr. Len Valentino has invited community members and medical professionals to “start the conversation” on gene therapy. The opinions shared in these pieces do not necessarily reflect the views of the foundation.]
This March, celebrate National Women’s History Month by learning more and giving back. See how you can get involved, live altruistically and make a difference in the lives of girls and women around you.
NHF is pleased to announce that its collaboration with Medscape continues with a new accredited educational activity designed to help healthcare providers fully incorporate gene therapy into the collaborative care model.
National Hemophilia Foundation Launches “Pathway to Cures,” a Venture Philanthropy Fund to Accelerate the Development of Transformational Therapies and Technologies for Inheritable Blood Disorders
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MEDIA CONTACT:
iostrin@hemophilia.org
FOR IMMEDIATE RELEASE
MEDIA CONTACT:
iostrin@hemophilia.org
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.
During legislative session, NHF's chapter network, public policy staff, and the bleeding disorders community at large has been hard at work advocating across the United States! For the month of February, here are some advocacy and policy highlights from the beginning of this year:
The U.S. Food and Drug Administration (FDA) has approved ALTUVIIIO ™, formerly known as efanesoctocog alfa, for routine prophylaxis and on-demand treatment to control bleeding episodes, as well as perioperative management (surgery) for adults and children with hemophilia A.
Even if you care about a cause, how can you ensure you’re a good fit for the position? Here are some ideas to help you find the right fit for volunteering.
Washington, D.C. - The APLUS Coalition, an alliance of patient advocacy organizations, has announced a new joint statement in a show of solidarity for those living with conditions requiring the use of blood and/or plasma products. The statement comes after the U.S. Food and Drug Administration (FDA) announced new draft guidance that would implement an individualized risk assessment for all potential donors regardless of their sexual orientation or the gender of their partners. This comes after many years of attention to the deferral criteria for men who have sex with men (MSM).
Valentine’s Day can be much more than a holiday to spoil your loved ones. This February 14th, consider spreading the love in altruistic ways. Check out these tips to make your Valentine’s Day one to remember.
While it is well understood that individuals with von Willebrand disease (VWD) will experience a variety bleeding episodes throughout their lifetime, the psychosocial impact of these symptoms has received relatively little inquiry. Greater knowledge of these impacts could help inform and support potential mental health screening efforts for VWD patients at U.S. hemophilia treatment centers (HTCs).
To help fill this gap a group of researchers from several HTCs across the country sought to estimate rates of symptomatic depression and anxiety among individuals with VWD.
This year, NHF celebrates its 75th anniversary. And in honor of this incredible milestone, NHF is welcoming a new era for the inheritable blood and bleeding disorders community by creating a more equitable future for all. This new moment in time will include ongoing and reemphasized priorities, such as eliminating barriers to care, fostering opportunities to interact with the community, and increasing diversity and inclusion in research and advocacy efforts.
Black History Month is a time to remember, celebrate and commemorate the achievements and contributions by African-American men and women throughout U.S. history.
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The World Federation of Hemophilia (WFH) has launched a new registry to help monitor the long-term safety and efficacy of hemophilia gene therapies in people with hemophilia across the globe.
Sanofi recently announced newly published clinical trial data for efanesoctocog alfa, the company’s investigational recombinant factor VIII therapy (rFVIII) for the prevention of bleeding episodes in hemophilia A patients via once weekly prophylactic intravenous infusions.
Give yourself and your loved ones the greatest gift this American Heart Month by focusing on making heart-healthy decisions towards a happier and healthier lifestyle.
FOR IMMEDIATE RELEASE
Contact: Ilana Ostrin
212-328-3769
There are plenty of ways you can continue to volunteer your time and efforts to make the world a better place—even from the comfort of your home or inside the warmth of an organization! Check out these eight opportunities to give back during the winter.
FOR IMMEDIATE RELEASE
Contact:
Ilana Ostrin
212-328-3769
Precision BioLogic Inc., a company specializing in hemostasis diagnostics, recently announced that they have received the requisite clearance from the U.S. Food and Drug Administration (FDA) to launch and market their CRYOcheck™ Chromogenic Factor IX assay.
Precision Biologic Inc., a company specializing in hemostasis diagnostics, recently announced that they have received the requisite clearance from the U.S. Food and Drug Administration (FDA) to launch and market their CRYOcheck™ Chromogenic Factor IX assay.
Dr. Martin Luther King Jr. helped make the world a better place and advocated for equal rights for everyone. Use MLK Day as a time to honor his legacy by giving back or doing something good for somebody else.
BioMarin recently shared a community update on their Hemophilia A Clinical Development Program for valoctocogene roxaparvovec, the company’s investigational gene therapy currently under review by the U.S. Food and Drug Administration (FDA). It included a brief clinical trial overview with the following updates:
Takeda recently announced favorable results from a phase 3 study of TAK-755, the company’s investigational enzyme replacement therapy for an ultra-rare blood disorder known as congenital thrombotic thrombocytopenic purpura (cTTP).
With a new year comes new opportunities to give back and do more good. Remember that there’s never a bad time to start giving back. Even if you fall off track, there’s always time to get back in the saddle.
FOR IMMEDIATE RELEASE
Ilana Ostrin
Senior Director of Public Relations and Communications
iostrin@hemophilia.org
212-328-3769
NHF Announces 2023 Winter/Spring Wednesday Webinar Schedule
The free series will continue in the new year with topics including gene editing experiments, innovative insurance cards, substance use, and more.
Pfizer recently announced positive top-line results from the phase 3 BENEGENE-2 clinical study, which is currently evaluating the investigational gene therapy fidanacogene elaparvovec for the treatment of adult males with moderately severe to severe hemophilia B.
FOR IMMEDIATE RELEASE
Ilana Ostrin
Senior Director of Public Relations and Communications
iostrin@hemophilia.org
212-328-3769
NHF Assumes Leadership of the American Plasma Users Coalition
The organization’s public policy representatives offer new perspectives in the mission for blood and product safety.
The holidays are a wonderful time to spend together with family, friends and loved ones. However, it’s also an opportunity to give back
Recruitment is now open for Own Your Path- a program for young adult males with hemophilia who are currently in the transition years between 18-29. We know that maintaining adherence to a prophy regimen can have short and long -term health benefits. This program focuses on helping participants be successful by focusing on education, health coaching, skill building, and relationship building, all within an app-based environment that includes participation incentives.
Additional program benefits include:
When it’s time to start a new healthy habit, it can be pretty difficult. If you want to start the new year with a habit that will actually stick, check out these tips to get started.
Organization set to look back while moving ahead during historic year
Spark has announced updated multi-year results from its phase 1/2 clinical trial of SPK-8011, the company’s investigational gene therapy for hemophilia A. The results were presented at the recently concluded 64th American Society of Hematology (ASH) annual meeting in New Orleans, Louisiana.
One patient changed Dr. Amy Dunn’s entire career the first-year of residency. It was then that Dr. Dunn diagnosed her first patient with hemophilia.
FOR IMMEDIATE RELEASE
December 13, 2022
MEDIA CONTACT:
Ilana Ostrin
212-328-3769
iostrin@hemophilia.org
Organization set to look back while moving ahead during historic year
