In January of this year, I joined the board of the National Bleeding Disorder Foundation. I’ll be honest, while I knew about boards and non-profits in general, I knew next to nothing about the bleeding disorder community. Ten months in, I’ve still only scratched the surface, but it’s already had a profound impact on how I think about medical research, health inequities, advocacy, and the lives of people living with chronic disorders.
NBDF is the largest organization in the US to support all aspects of this remarkable community through education, advocacy, and support for both research and practitioners. Of NBDF’s many priorities, one that is dear to my heart is the “Women and girls bleed, too” program. From 2014-2024 there were over 130 interventional studies on hemophilia with over 4500 participants – of those participants, only four were women. For the longest time, women have been treated only as carriers of the disorder, not people who could have hemophilia. We now know this isn’t true and yet research focusing on women and girls, or even including them, lags sorely behind, a reality NBDF and so many inspirational and influential members of the community are working to change. The ripple effect of this work extends far beyond the bleeding disorders community.
In fact, like most things, what happens in the bleeding disorder community doesn’t happen in a vacuum. Hemophilia research has greatly contributed to advances in other fields of medicine. The development and refinement of adeno-associated viral (AAV) vectors for gene therapy in hemophilia have informed similar approaches for other inherited conditions, such as certain forms of muscular dystrophy. In addition, research on preventing and managing inhibitor formation in hemophilia has deepened understanding of immune tolerance, informing approaches in autoimmune disease and transplantation medicine.
The world may sometimes feel like it’s spinning out of control these days, and when it feels overwhelming, I remind myself that while I can’t control everything (much as I would like to!) I can control how I respond. I make it a priority to give my time and my own resources to NBDF because it makes a world of difference to this (relatively) small community. I see a tangible difference, not just for people with bleeding disorders, but for everyone who believes in equal access to quality healthcare. I hope you’ll join me in making a donation today. Together, we can help ensure every person has the chance to live fully, without limits.