In keeping with the spirit of National Family Caregivers Month, November HANDI Highlights is dedicated to resources that help support the caregiving community.

This edition includes resources that speak to challenges universal to all caregivers as well as those unique to caring for individuals with bleeding disorders. Topics include school/daycare coordination, financial planning, caregiver burnout, advocacy, aging, and multi-generational caregiving,

Individuals with severe von Willebrand disease (VWD), the most rare and severe form of the condition, can experience a wide range of bleeding symptoms ranging from relatively mild to serious.

The National Bleeding Disorders Foundation (NBDF) is pleased to announce that three new documents have been issued by the Medical and Scientific Advisory Council (MASAC).

MASAC create recommendations and advisories on treatment, research, and other general health concerns of the inheritable bleeding disorders community.

The National Bleeding Disorders Foundation (NBDF) is pleased to announce that Evan Schow of Bigfork, Montana was selected as the recipient of the 2024 Kevin Child Scholarship (KCS). The Child family selected Evan as this year’s KCS award recipient from among 30 applicants.

October HANDI Highlights is dedicated to an historically underserved group within the inherited bleeding disorders community - women, girls, and people with the propensity to menstruate (WGPPM). While awareness of these populations has increased in recent years, they continue to be underserved in terms of timely diagnosis and management. 

On October 11, 2024, Pfizer announced that the U.S. FDA approved HYMPAVZI™ (marstacimab-hncq) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and pediatric individuals 12 years of age and older with hemophilia A without factor VIII (FVIII) inhibitors, or hemophilia B without factor IX (FIX) inhibitors. 

A recent communication has been released regarding the memorial service for the late Neil Frick, a cherished colleague whose passing has deeply affected the National Bleeding Disorders Foundation (NBDF) and the bleeding disorders community.

Neil Frick’s memorial mass is scheduled for Friday, October 25, 2024, at 10:45 AM Eastern time. It will be held at St. Gregory The Great Church, located at 242-20 88th Avenue, Bellerose, New York 11426. 

In the wake of Hurricanes Milton and Helene, we at the National Bleeding Disorders Foundation (NBDF) want to take a moment to let you know that we are thinking of you during this difficult time. Our hearts are with all those affected in Florida, Georgia, North Carolina, South Carolina, and Tennessee, where so many are facing overwhelming challenges—especially in accessing vital medical care.

The U.S. Food and Drug Administration (FDA) is holding a public webinar that will speak to the ways in which a strong support network can help mitigate some of the inherent challenges associated with clinical trial participation. 

Finding Your Support Team While Participating in a Clinical Trial will feature a panel of patients, care partners, and advocates discussing:

Findings of a new preclinical study published online in Nature Communications may help address lingering questions relevant to the long-term durability of approved hemophilia A gene therapy. The research was led by Lindsey A. George, Director of Clinical in Vivo Gene Therapy and attending physician with the Division of Hematology at the Children’s Hospital of Philadelphia (CHOP). 

Celebrating Excellence in the Bleeding Disorders Community 

The Georgia World Congress Center in Atlanta buzzed with anticipation as the bleeding disorders community gathered for the pinnacle of the 2024 Bleeding Disorders Conference: The National Bleeding Disorders Foundation's (NBDF) Awards of Excellence ceremony. This night was more than just a distribution of accolades; it was a celebration of resilience, innovation, and unwavering commitment to improving lives.

Honoring a Lifetime of Achievement

The National Bleeding Disorders Foundation (NBDF) is proud to support International Plasma Awareness Week (IPAW), taking place October 7-11 this year. This annual event highlights the critical importance of plasma donation and plasma-derived medicines for our community.

Why It Matters: Plasma-derived therapies are essential for many individuals with bleeding disorders. IPAW helps educate the public about plasma donation and its life-saving impact.

How To Participate 

The National Bleeding Disorders Foundation (NBDF) is proud to support Reflections Atlanta, an innovative event aimed at raising awareness about the importance of diversity in clinical trials. The event will take place on October 13th, 2024, in Downtown Atlanta, offering an immersive experience that brings together art, education, and community engagement to spark vital conversations about representation in medical research.

The Capitol Connection session at this year's Bleeding Disorders Conference transformed complex policy into tangible hope for patients. As attendees filled the room, conversations ranged from insurance worries to advocacy strategies, setting the stage for an engaging discussion.

Nathan Schaefer, Senior VP for Public Policy and Access, broadened perspectives on advocacy. "It's about regulatory comments, letters to Congress, and building relationships," he noted, expanding the definition of what it means to be an advocate.

As the sun set on the final day of the Bleeding Disorders Conference (BDC), the atmosphere shifted from professional to playful. The closing night event in the Omni Grand ballroom transformed the conference into a vibrant celebration of community, resilience, and joy.

NBDF’s education team unveiled a game-changing update to its "Steps for Living" initiative at the 2024 Bleeding Disorders Conference, marking a new era in patient education.

Lina Volland, Director of Education at NBDF, highlighted the need for change. "As our resource grew, so did the challenges in keeping it accessible and current," she explained. The old website struggled with inconsistent content and navigation issues.

At this year's Bleeding Disorders Conference, Samantha Carlson and Kristie Harvey-Semi led a session that went beyond our usual discussions of coagulation factors and treatment plans. Instead, we found ourselves exploring the complex history of racial wealth disparities in America.

Kristie, Senior Director of Chapter Advancement and Training at NBDF, guided us through a simulation that brought historical policies to life. With cards representing race, money, and land, she traced the impact of 13 key policies from the post-Civil War era to present day.

In a session that felt more like a heartfelt conversation among friends than a formal presentation, the National Bleeding Disorders Foundation (NBDF) research team opened our eyes to a powerful truth: the most valuable experts in bleeding disorders research are often the patients themselves.

A manufacturing deviation at NovoNordisk's Danish facility has led to potential underfilling of vials for NovoSeven©, NovoEight©, and Esperoct© - crucial treatments for hemophilia and other blood disorders. While alternative treatments exist for NovoEight and Esperoct, the NovoSeven shortage could have significant implications due to its unique indications and limited alternatives.

In a powerful session, the "Black & African American Voices" panel brought to light the often-overlooked challenges faced by people of color in the bleeding disorders community. The discussion, featuring a diverse group of speakers, painted a vivid picture of the intersectionality between race, health, and identity.

At the Bleeding Disorders Conference, a pioneering session led by Dawn Rotellini of the National Bleeding Disorders Foundation put women's health in the spotlight. The panel introduced a game-changing concept: WGPPM (Women, Girls, and People with Potential to Menstruate), signaling a shift towards more inclusive care.