VHF staff, board members, constituents, and HTC partners joined over 2,000 attendees at NBDF’s 77th Annual Bleeding Disorders Conference in Denver from August 21–23. Thanks to VHF travel grants, eight constituents and their families enjoyed three days filled with educational sessions, networking, and exhibits. A standout moment was seeing VHF members Paxton Mills and Kim Wilt present during the sessions. Mark your calendars now for next year’s conference in Orlando, FL, August 13–15, 2026!
This year, thanks to the VHF Terry Lamb Scholarship, Daniel Abraham was able to attend the conference and bring back insights that will benefit the Virginia bleeding disorders community. From his involvement with the Educate to Elevate campaign, to emphasizing the importance of participating in the Community Voices in Research (CVR) survey, Daniel’s experience highlights the power of advocacy, education, and sharing lived experiences.
We’re proud to support members like Daniel, who return from the national conference with knowledge, inspiration, and actionable ideas. Read Daniel’s letter below to learn more about his highlights and why your voice matters in shaping research and advocacy.
Dear VBDF Board of Directors, members of the Terry Lamb Scholarship Committee, and The Donors that Make It All Possible,
Thank you for your generosity in sending me to the national bleeding disorders conference. As usual, I feel it’s my obligation to bring back new information, education, and experiences to you and the rest of the Virginia community so that we may all benefit from the incredible scholarship program we have.
This year at the conference I had the opportunity to work with Kenneth Lowenberg of the Talkaboutit.org company. Ken, along with his business partner, actor Greg Grunberg, have started a campaign called Educate to Elevate. The idea here is short videos featuring celebrities talking about bleeding disorders, alongside Lived Experience Experts like myself and a few fortunate others, will raise visibility into our rare medical condition, and inspire dedication and commitment to advocacy and community. We hope to reach those who have bleeding or platelets disorders and caregivers who may not have a local chapter or HTC to go to, as well as people not affected who might otherwise be inspired to help. Soon you may see my face answering a few questions about what it’s like to live with an inherited bleeding disorder, why advocacy is important, and what the Virginia Bleeding Disorders Foundation has contributed to my life. I hope it’s enough.
There were many great sessions to be seen, and it’s often hard for people who go to the national conference to pick just one favorite, but for my part my favorite session dealt with survey data and what it means for our community. As a member of the LEE Research Advisory Council for the national foundation, it’s my obligation to interact with and improve upon the Community Voices in Research survey currently available on the bleeding.org website. Having more and more data available from those like myself as well as caregivers and family members will help future researchers make new determinations and may generate new clinical trials that will eventually lead to better quality of life outcomes for those living with bleeding or platelet disorders, bring us new treatments, or help others divert funding to solve problems we didn’t previously know we had.
It’s my hope that each and everyone one who reads this letter will take the CVR survey and help us improve the future of new research. But knowing why you should is important too. One of the questions that was asked during the session was “how can we convince people to take a 30 minute survey?” After all, these days we’re often bombarded with surveys, from how was your food and drink at your local restaurant, to how can we make your hotel room more comfortable, to what can we do to improve your flight? (After reflection, these were all surveys I was personally accosted with on the very day I wrote this letter). It’s no wonder some people might feel apprehensive about answering yet another survey. I’ll not try to repeat the answers we received from the panel, instead I’ll give you my own ruminations on the matter: often with your average ‘common’ medical condition, there resides a veritable cornucopia of patients willing to take surveys and improve research with their answers, as well as the fact that the topic is already well researched by those come and gone because of how much of the population it afflicts. Unfortunately those of us with bleeding or platelet disorders do not have that benefit. We must therefore rely on ourselves to provide the necessary information for future research to help us. Because of how incredibly rare bleeding disorders are (some even more so than others), each individual who answers these surveys has an incredibly large impact and contribution to the data set. As you might know, the more data you have the better quality conclusions you can draw from it. In this circumstance, each voice is worth so much. So please, even if you think you won’t have much of an impact perhaps because you’re a caregiver and you think it doesn’t matter as much or you’re someone with one of the more ‘common’ bleeding disorders like me, I encourage you to make an impact today and take the survey. Your voice, alongside everyone else’s can and will make a difference in the future.
Once again I want to thank the scholarship committee for sending me to denver to learn and experience all the national foundation has to offer. I am already eagerly anticipating next year.
With sincere thanks,
Daniel Abraham
