NHF’s Community Voices in Research

Dear Community Members,

The National Hemophilia Foundation wishes to inspire and partner with the community on their journeys to a cure and insure access to safe and effective treatment and care for all. In order to achieve these imperatives, research is a priority. With new treatment methods and gene therapy on the horizon, we remain committed to serving the bleeding disorders community and all stakeholder groups. In keeping steadfast in our efforts to serve the entire bleeding disorders community, we are announcing that the community powered registry known as MyBDC will be transitioning to be known as the NHF's Community Voices in Research. We need to continue to hear the voice of our community to help guide the direction of NHF in determining the future of our research initiatives. In doing so, we will be holding a State of the Science Summit in the Spring of 2021 to discuss and determine key research priorities and initiatives NHF will be investing in for the future. This summit will bring together our community stakeholder groups to discuss and guide the research agenda. 

We thank all the MyBDC participants and ensure you that all information you shared is safe and secure as it always has been. We will continue to engage with you during this transition. Your input through the NHF community portal moving forward is more important now than it has ever been. We are committed to giving you the valued personalized dashboard that you’ve come to know, and we count on you to give us the insights we need. 

Thank you for your continued support, and we look forward to engaging and including the bleeding disorders community through this transition.

Sincerely,  

Leonard A. Valentino, M.D.