National Bleeding Disorders Foundation

National Bleeding Disorders Foundation Dedicated to finding better treatments and cures for inheritable blood disorders and to preventing the complications of these disorders through education.
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Who belongs on the NBDF Board of Directors? Maybe you. ❤️Our board is made stronger by different perspectives, experienc...
09/03/2026

Who belongs on the NBDF Board of Directors? Maybe you. ❤️

Our board is made stronger by different perspectives, experiences, professions, and connections to the bleeding disorders community. Some members are parents. Some are healthcare professionals. Others bring backgrounds in advocacy, business, law, nonprofit leadership, and beyond.

What brings them together is a commitment to improving the lives of people affected by bleeding disorders.

As board member Ziva Mann puts it, “It takes lots of different kinds of people to make a strong board.” Now, we're inviting new voices to help shape what comes next.

🔗 Learn more about serving on the NBDF Board and apply: https://bit.ly/4gPHYOy

Four decades of advocacy, leadership, and impact. ❤️At BDC 2026, NBDF honored Mark Skinner, JD, with the Lifetime Achiev...
09/02/2026

Four decades of advocacy, leadership, and impact. ❤️

At BDC 2026, NBDF honored Mark Skinner, JD, with the Lifetime Achievement Award, recognizing his extraordinary contributions to the bleeding disorders community in the U.S. and around the world.

Learn more about Mark’s legacy and the work that earned him one of NBDF’s highest honors: https://bit.ly/3SrpdI6

Period tracking can be a powerful tool for managing bleeding disorders, but how much do you know about where your data g...
09/02/2026

Period tracking can be a powerful tool for managing bleeding disorders, but how much do you know about where your data goes?

Our latest article explores the benefits of period tracking apps, privacy concerns, and what women and girls with bleeding disorders should know before sharing sensitive health information.

🔗 Read more: https://bit.ly/3Uu2QlF

NBDF mourns the loss of Deeksha Katoch, MBBS, MHS, a 2025 NBDF-Takeda Clinical Fellow. Dr. Katoch was a compassionate cl...
09/01/2026

NBDF mourns the loss of Deeksha Katoch, MBBS, MHS, a 2025 NBDF-Takeda Clinical Fellow.

Dr. Katoch was a compassionate clinician-investigator whose work focused on improving access to care for people with inherited bleeding disorders, particularly in underserved communities.

We extend our deepest condolences to her family, friends, colleagues, patients, and all who knew her.

🔗 Read more: https://bit.ly/4cnvdby

Treatment availability update for the hemophilia B community:CSL Behring has shared an update regarding the availability...
08/28/2026

Treatment availability update for the hemophilia B community:
CSL Behring has shared an update regarding the availability of HEMGENIX® (etranacogene dezaparvovec-drlb), its gene therapy for hemophilia B.

Following the temporary global stockout announced in March 2026, the company reports that it reestablished a limited supply in April and continues to actively manage existing supply.

🔗 Read the full update and learn more: https://bit.ly/3S7JmCU

From Capitol Hill to statehouses across the country, decisions are being made that could impact access to care for the b...
08/27/2026

From Capitol Hill to statehouses across the country, decisions are being made that could impact access to care for the bleeding disorders community.

In our latest advocacy update, we're following federal funding for FY2027, Medicaid work requirements, proposed 340B reforms, Essential Health Benefits, and other policies affecting access and coverage.

At the state level, NBDF and our partners continue to advocate on issues impacting the community, including copay assistance, HTC services, Medicaid coverage, and more.

📣 Stay informed about the policies we're watching and the work underway to protect access to care.
🔗 Read the latest advocacy update: https://bit.ly/4hPIaOT

The final BDC Daily is here 📰The conversations at BDC don’t end when the conference does. From women advocating for bett...
08/26/2026

The final BDC Daily is here 📰

The conversations at BDC don’t end when the conference does. From women advocating for better diagnosis and care and for lived experiences shaping research, to families preparing the next generation, emerging treatment possibilities, and the leaders, advocates, and volunteers making a lasting impact, our final issue looks at the people and ideas moving the bleeding disorders community forward.

🔗 Read the final BDC Daily: https://bit.ly/4hVrCVO

08/26/2026

Speaker: Meera Chitlur, MD | This program will focus on an ultra-rare bleeding disorder, hereditary factor X deficiency (HFXD). Attendees will learn more about this severe bleeding disorder, including symptoms, testing, and unique severity scale. During this session, Dr. Chitlur will also discuss the burden of disease, current treatment landscape, considerations for patient management, and the role of single-factor replacement, COAGADEX, in the treatment of HFXD.

On Women’s Equality Day, we honor the progress made and recognize the work still ahead to achieve health equity. For wom...
08/26/2026

On Women’s Equality Day, we honor the progress made and recognize the work still ahead to achieve health equity. For women and girls with bleeding disorders, equality means access to proper diagnosis, treatment, and support.

08/25/2026

Equitable care starts with community.

Hear from Penny Johnson Gerald, Dawnn Rotellini, Dr. Keri Norris, and Mosi Williams as they share a vision for a future where every person living with a bleeding disorder has access to quality care, meaningful support, and a community where they belong.

💙 When everyone has a seat at the table, we all move forward together.
🔗 Learn more at https://bit.ly/4fXSumr

Address

1230 Avenue Of The Americas 16th Floor
New York, NY
10021

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+12123283700

Website

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