If you’re looking for cool ways to donate your gently used items, check out this list of things you can and should donate, and some unique ideas of where to give them.

CSL Behring, the biopharmaceutical company behind the hemophilia B gene therapy HEMGENIX ® (etranacogene dezaparvovec-drlb), announced on March 17, 2026, a temporary global stockout of the therapy. This disruption means that some individuals in countries where HEMGENIX is commercially available may experience delays in accessing treatment.

The National Bleeding Disorders Foundation (NBDF), a leading nonprofit supporting people with bleeding disorders, is proud to congratulate Matthew Delaney, government relations manager, on being named to City & State New York’s 2026 Albany 40 Under 40, an annual list recognizing rising stars in New York State government, politics, and public service.

A Personal Connection to the Bleeding Disorders Community

Federal:  

NBDF Wraps Up Another Successful Washington Days

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.

This National Women’s History Month, you can honor women who have strived to make a difference in the world, along with women in your community today.

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.

The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new matching grant partnership with Save One Life that will double the community’s impact for children living with bleeding disorders, including hemophilia A, hemophilia B, and von Willebrand disease in developing countries.

Pathway to Cures (P2C), the venture philanthropy fund of the National Bleeding Disorders Foundation (NBDF), is pleased to announce the appointment of Michael Recht, MD, PhD, MBA, as chief medical and scientific advisor.

BioMarin Pharmaceutical Inc. has announced that it has decided to pull the hemophilia A gene therapy ROCTAVIAN (valoctocogene roxaparvovec-rvox) from the United States market.

The month of February reminds us to seek out stories and histories, and recognize the significance of black history. Take these ideas to heart and practice them as you honor Black History Month.

The National Bleeding Disorders Foundation (NBDF) mourns the passing of Lynn M. Malec, MD, MSc, a physician, researchers, and champion of the bleeding disorders community.

Employers are looking for more than just a good employee; they want someone with experience, good people skills and who stands out from the crowd. Make your resume jump out by adding volunteer experience.

This Valentine’s Day, give love to others by living an altruistic lifestyle and giving back. Try out some of these Valentine’s Day tips to truly see love blossom in your life.

FY 2026 Funding Update  

Last week, the House of Representatives passed the final fiscal year (FY) 2026 appropriations bills. This includes the FY26 Labor, Health and Human Services appropriations bill, which provides funding for the federal health agencies. There were big wins in the bill for the bleeding disorders community, including:  

FY 2026 Funding Update  

Last week, the House of Representatives passed the final fiscal year (FY) 2026 appropriations bills. This includes the FY26 Labor, Health and Human Services appropriations bill, which provides funding for the federal health agencies. There were big wins in the bill for the bleeding disorders community, including:  

With the deep cold, consistent darkness and long hours spent indoors, winter can be a pretty difficult season to get through, and it can often affect our mood.

With the new year comes new goals, new ambitions and new horizons to set our eyes on. Last year is a thing of the past; now, we’re ready to accomplish something bigger and better in 2026.

The National Bleeding Disorders Foundation (NBDF) is launching Educate to Elevate, a multi-year initiative to raise public awareness, educate communities, and improve healthcare access for individuals with bleeding disorders. 

The campaign features celebrity advocates including Melora Hardin, Amy Jo Johnson, Jonathan Frakes, Jason Ritter, and Greg Grunberg, alongside medical experts and people living with bleeding disorders, amplifying the experiences and challenges faced by people who live with these disorders every day.

Why This Matters

The National Bleeding Disorders Foundation (NBDF) offers multiple funding opportunities for bleeding disorders researchers across all career stages and disciplines. Through the Judith Graham Pool Postdoctoral Research Fellowships, the Sanofi-sponsored Career Development Award, the Takeda-sponsored Clinical Fellowship, and the Excellence Fellowships, NBDF’s grant programs support diverse research needs, including basic science, clinical projects, and innovative technologies.

After decades of research during which gene therapy was considered a distant goal, FDA-approved gene therapy options for hemophilia are now available in the United States. As these therapies enter real-world clinical practice, patients and care teams are navigating new access and coverage considerations that differ from more traditional treatment models.

The National Bleeding Disorders Foundation (NBDF) has announced the recipients of its 2025 research grant cycle, providing new research funding through its the Judith Graham Pool Postdoctoral Research Fellowship,  Excellence Fellowships in Social Work, Nursing, and Physical Therapy, and the Sanofi-sponsored Career Development Award. This year’s cohort reflects the full breath of bleeding disorders research, spanning basic science, clinical investigation, and qualitative studies led by nursing, social work, and physical therapy professionals.

Federal Updates: 

House of Representatives Reintroduces HELP Copays Act 

If you want to make a difference in 2026, make giving a part of your New Year’s resolutions. Here are some ideas for how you can create resolutions that give back.

The National Bleeding Disorders Foundation (NBDF) has joined with World Federation of Hemophilia (WFH) with issuing a joint statement on a severe adverse event with marstacimab rebalancing agent for hemophilia (Hympavzi®). NBDF believes it is important for the community to be informed as quickly and thoroughly as possible about all adverse events that can impact people’s informed decision-making regarding their treatment. As Pfizer shares more information regarding their ongoing investigation into this event, NBDF will continue to update the community.

Santa Claus is a staple of the winter season, and has been for a very long time. But what do we really know about this jolly legend? Today, we’re going to find out.

The National Bleeding Disorders Foundation (NBDF) is delighted to announce that Luke Luckey of Manchester, Michigan, was selected as the recipient of the 2025 Kevin Child Scholarship (KCS). The Child family selected Luke as this year’s KCS award recipient from among more than 20 applicants.

As you prepare for all of the gifts, parties and dinners headed your way this season, here are some ideas for how to decrease stress during the holidays.

Hemab Therapeutics recently announced positive results from a Phase 2 clinical study of their investigational subcutaneous therapy sutacimig. 

Sutacimig is a laboratory-engineered bispecific antibody being developed as the first-ever prophylactic treatment for individuals with Glanzmann thrombasthenia (GT), one of several diseases the company is looking to ultimately target with this investigational, sub-Q therapy. 

On December 4, 2025, Representatives Kean (R-NJ), Barragán (DCA), Miller-Meeks (R-IA), Auchincloss (D-MA), Fitzpatrick (R-PA), and Watson-Coleman (DNJ) reintroduced the Help Ensure Lower Patient (HELP) Copays Act to make necessary and life-saving prescription medications more affordable for patients with rare, serious, and chronic conditions such as hemophilia, von Willebrand disease, and other rare bleeding disorders.

CSL recently announced the publication of five years’ worth of data from their HOPE-B clinical trial program, which has been investigating the company’s hemophilia B gene therapy Hemgenix® (etranacogene dezaparvovec).

Federal:

Fiscal Year 2026 Funding Update 

Star Therapeutics recently announced interim data from an ongoing phase 1/2 clinical trial evaluating its investigational von Willebrand disease (VWD) therapy VGA039. 

For those of us who are able to give more, this is the perfect opportunity to get involved in your community and help spread the holiday cheer this season.

NBDF is excited to announce that its Facts About Inhibitors booklet is now available in an Arabic language version. Using easy-to-understand language, this publication includes important information about how inhibitors develop in people with hemophilia, key risk factors, and tips on getting screened.

The holiday season is a great time to recognize the many dedicated caregivers in the bleeding disorders community. This edition of the Resource Roundup (RR) includes resources that address everyday challenges universal to all caregivers as well as those unique to individuals with bleeding disorders. 

If you want to join in and celebrate National Write a Friend Month during this wonderful winter season, here are a couple writing ideas to get you started.

With Thanksgiving nearly 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.

NBDF’s inaugural Research Roundtable was held in Washington, D.C. on October 15-16, 2025. The meeting brought together lived experience experts (LEEs), researchers, healthcare providers, and industry leaders in a pre-competitive, product-agnostic setting to address barriers faced by women, girls, and people with the potential to menstruate in bleeding disorders research. Although the FDA could not attend due to the government shutdown, NBDF engaged with them on key agenda topics beforehand and plans to resume the dialog with them further once the government reopens.

The World Federation of Hemophilia (WFH) recently published an Arabic language version of their booklet Women and Girls with Hemophilia (2023) which is meant to aid outreach and educational efforts around the world, especially for such a classically underserved subgroup. Historically, women and girls affected by hemophilia have experienced protracted delays in securing an accurate diagnosis and care that takes bleeding disorders into full account.

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.

Pathway to Cures, NBDF’s venture philanthropy fund, has added SeraGene to their portfolio of emerging biotech companies addressing unmet needs in the inheritable blood and bleeding disorders community. Meet the team!

Three new documents have been issued by NBDF’s Medical and Scientific Advisory Council (MASAC), which creates recommendations and advisories on current treatment, research matters, and other general health concerns for the inheritable bleeding disorders community.

Off-Label Use of Emicizumab in Acquired Hemophilia A

Federal:

Government Shutdown 

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 commercialization of hemophilia AAV gene therapies in recent years has created a steep learning curve for clinicians, patients, and other stakeholders in the bleeding disorders community. As a novel treatment unlike any that has come before, gene therapy has compelled a series of questions and considerations relevant to its efficacy, safety, patient eligibility, implementation, cost/reimbursement, and more.

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.

NBDF monitors emerging therapies and changes in the therapeutic landscape that may affect people living with bleeding disorders. One of those developments involves BioMarin’s decision to out-license (allowing another company to market and sell) ROCTAVIAN, their gene therapy for adults with severe hemophilia A. 

This statement from BioMarin explains their decision:

The latest Resource Roundup (RR) is dedicated to women, girls, and people with the propensity to menstruate (WGPPM), all historically underserved groups within the inherited bleeding disorders community. While recognition of these populations and their struggles to achieve healthy equity has increased recently, affected individuals continue to face challenges when it comes to timely diagnosis and management. 

If you strive to live an altruistic lifestyle, there are lots of ways to help out this Halloween. Here are some top tricks to make Halloween a treat for everyone.