YOUR DOLLARS AT WORK
RUN WITH NBDF
A LETTER FROM THE CEO BLEEDING DISORDERS AWARENESS MONTH AND MORE...
A LETTER FROM THE CEO
Friend,
I have the privilege of serving as President and CEO of the National Bleeding Disorders Foundation (NBDF) and I am thrilled to have celebrated my first year in this role. As I reflect on the milestones achieved at NBDF since my arrival, I am inspired by the remarkable legacy of our organization and the dedicated community that supports our mission.
BDC 2024
Over the last 12 month we have collectively reached several key milestones to strengthen our impact, including:
Red Tie Soiree
Restructuring our organization to better serve the bleeding disorders community.
TCS N City M
Receiving a Four-Star Rating from Charity Navigator and a Platinum Seal from Candid/GuideStar, underscoring our transparency and accountability. Expanding education initiatives like THRIVE, Own Your Path, Steps for Living to empower more people with bleeding disorders to make educated decisions surrounding their care
Make a This Y
Expanding the Comprehensive Care Sustainability Collaborative (CCSC) to improve patient access to medicine and protect the critical work of Hemophilia Treatment Centers (HTCs)
Supporting chapters with a new partnership model and hosting initiatives like the Chapter Leadership Summit and chapter tracks at the Bleeding Disorders Conference to share best practices.
Honoring Neil Frick
Advancing research through initiatives like MASAC’s cutting-edge recommendations, the Research Roundtable for Bleeding Disorders, and our Pathway to Cures campaign, all while amplifying Community Voices in Research
Stakeholder Spotlights: Hemophilia Alliance
Your support fuels research, services, and advocacy, empowering the voices of our entire community I am truly honored by your commitment to our mission
Thank you for standing with us.
Warm regards,
Genentech
Phil Gattone Chief Executive Officer
National Bleeding Disorders Foundation
JOIN US AT BDC
Registration is now open for NBDF’s 77th Bleeding Disorders Conference, August 21-23, 2025, in beautiful Aurora, Colorado! This premier event will unite patients, families, and healthcare professionals for three days of insightful educational sessions, valuable networking opportunities, and a dynamic exhibit hall featuring leading organizations and research presentations. Don’t miss your chance to participate in this impactful gathering register early and join us for an unforgettable experience!
RUN WITH NBDF IN 2025
Denver Colfax 5k, 10k, Half Marathon and Full Marathon. May 17-18, 2025
San Francisco 5k, 10k, Half Marathon and ll thon. July 26-27, 2025
TCS New York City Marathon November 2, 2025
Endurance races provide a powerful way to raise awareness and much-needed funds for the National Bleeding Disorders Foundation (NBDF). By joining NBDF’s Runners team, you transform your passion for running into meaningful support for those affected by inheritable blood and bleeding disorders.
Your participation in these races helps advance NBDF’s mission to improve the lives of individuals and families affected by inheritable blood and bleeding disorders. Whether you're running your first race or your fiftieth, your miles matter. Join us and make a lasting impact!
Spots are limited! If you are interested in participating, email Victor Da Silva at vdasilva@bleeding.org.
YOUR DOLLARS AT WORK
Washington Days was held on March 5- 7 and provided an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them.
Every year, NBDF looks forward to meeting with legislators and staff in person with hundreds of volunteer advocates across the United States to discuss issues important to our community.
The issues for Washington Days 2025 included:
The Help Ensure Lower Patient (HELP) Copays Act, bipartisan legislation addressing abusive health plan/PBM practices that target high-cost medications and the patients who rely on them.
Protecting access to Medicaid, which provides essential health coverage for at least one third of the bleeding disorders community.
Education on the federal hemophilia programs, which provide funding for multidisciplinary care at HTCs (Hemophilia Treatment Centers) and for HTC surveillance and prevention activities in addition to outreach and education programs
Information related to women and girls with bleeding disorders was incorporated to each of the three asks.
BLEEDING DISORDERS AWARENESS MONTH
Every dollar counts—and every act of generosity strengthens our shared mission of supporting individuals and families living with inheritable blood or bleeding disorders.
this march as we celebrate Bleeding Disorders Awareness month by making a gift to the NBDF.
LEAVE A LASTING LEGACY THROUGH PLANNED GIVING
There are many ways to plan an estate or legacy gift to help NBDF’s mission, like a bequest in your will or living trust, a charitable gift annuity of cash or stock, or by designating NBDF as the primary or contingent beneficiary in your planning.
By planning today, you ensure that NBDF continues to provide research, education, and advocacy for individuals and families affected by inheritable blood and bleeding disorders.
For more information about planned giving, please contact Beth Whitehouse, Vice President of Advancement at bwhitehouse@bleeding.org or visit our website today