August 2021
Donor Digest In this Issue:
A Vision for the Future Become a Marathon Runner! It's Make-a-Will Month Run, White, + Blue Recap A P2P Fundraiser Shares Her Story RSVP!
A Vision for the Future The future of inheritable bleeding disorders research takes root this September at the State of the Science Research Summit. From 9/12 to 9/15, NHF will join the community for a virtual conference unlike any other, and together, we’ll identify and accelerate research for affected individuals and their families. “Based on extensive input from the community about the most urgent and pressing needs, we are taking the lead to align the community on specific priorities that can dramatically improve care for the future,” said NHF CEO and President Dr. Leonard Valentino. “We’ve made tremendous progress as a community in recent years, but we are acutely aware of the health disparities and gaps in access that persist in the treatment of inheritable bleeding disorders, particularly among women and those with ultra-rare bleeding disorders.” Beginning in 2020, patients, caregivers, researchers, healthcare professionals, chapters, and industry partners participated in regular focus groups, which included listening sessions and surveys. What these community members shared allowed NHF to shape working groups that met regularly for nearly half a year. (continued below)