As we enter 2025, the VHL Alliance is proud to unveil a series of new initiatives aimed at advancing care, education, and support for individuals and families affected by von Hippel-Lindau disease (VHL).
This year, we’re launching innovative programs designed to empower individuals with VHL and caregivers, enhance medical education, and foster collaboration with leading healthcare institutions. From educational events for young adults to cutting-edge webinars featuring world-renowned experts, and updates to our family-oriented programming, 2025 promises to be a transformative year!
A New VHL-focused CME for Clinicians
In 2025, the VHL Alliance plans to launch a Continuing Medical Education (CME) program, designed to raise awareness of von Hippel-Lindau disease among primary care providers and specialists. This program will equip clinicians with essential knowledge about VHL while offering CME credits, fostering a deeper understanding of early diagnosis, appropriate referrals, and awareness of VHL disease.
By targeting clinicians within and beyond our Clinical Care Center (CCC) network, the program aims to boost referrals to CCCs, increase clinician engagement, and ultimately improve patient outcomes.
Introducing VHL Days: Building Community Locally
In 2025, the VHL Alliance is proud to launch VHL Days, a series of half-day educational events designed to bring vital resources and information directly to local communities affected by von Hippel-Lindau. These events aim to empower families navigating VHL, foster connections with local Clinical Care Centers (CCCs), and strengthen relationships between VHLA, CCC staff, and local ambassadors.
Each VHL Day will feature a comprehensive three hour program, including presentations on VHL Alliance resources, insights from local Clinical Care Center staff, an interactive Q&A session, and a lunch reception to encourage networking among attendees.
Stay tuned for more information on dates and locations for this initiative!
The VHL Alliance Walk 2025
This May, the VHL Alliance is excited to host the VHL Alliance Walk 2025, a nationwide event bringing together individuals, families, and supporters to raise awareness and funds for the VHL community. Building on last year’s success, this year’s event promises to be an even greater opportunity to raise awareness and funds for our patient support programs.
Whether you join us in person at a designated walk location or participate virtually from anywhere in the world, your involvement will help drive critical initiatives in research, education, and support. Funds raised through the walk will directly support our mission, enabling us to launch new programs, strengthen outreach efforts, and provide resources for those navigating VHL.
Empowering Volunteers: The VHL Ambassador Program
The VHL Alliance is proud to relaunch the VHL Ambassador Program in 2025, a volunteer initiative designed to extend our reach and strengthen connections within the VHL community. Ambassadors are individuals with lived VHL experience and their family members, trained to share VHLA resources, support newly diagnosed patients in their regions, and lead local engagement opportunities such as VHL Days or VHL Walks.
Equipped with a comprehensive Ambassador Handbook and supported through quarterly meetings, our ambassadors will play a pivotal role in fostering personal connections and creating supportive local networks. Through this program, we aim to extend our regional presence, cultivate local family groups, and increase the use of VHLA resources.
Advancing Collaboration: The VHL Research Forum
The VHL Alliance is thrilled to announce the launch of the VHL Research Forum, a transformative retreat designed to foster collaboration and innovation within the VHL research community. This initiative aims to create a dynamic, three-day gathering of top researchers.
Scheduled for November 2025, the retreat will bring together VHL leading experts and a cohort of multidisciplinary researchers for a weekend of collaboration, innovation, and mentorship.
The VHL Research Forum provides a unique platform for academics to engage with senior researchers, present innovative concepts, and refine their ideas through group feedback. The retreat’s collaborative environment aims to expedite research breakthroughs and strengthen connections within the VHL research community.
As an off-year complement to our International Medical Symposium, the VHL Research Forum will exemplify our commitment to accelerating progress and fostering a vibrant, connected network of researchers dedicated to improving outcomes for those affected by VHL.
In conclusion
The VHL Alliance is entering 2025 with a renewed commitment to advancing care, education, and connection within the VHL community. From innovative educational programs and research initiatives to expanded outreach and support, each of these efforts reflects our dedication to making a tangible difference in the lives of individuals and families impacted by VHL.
As we launch these transformative programs, we invite you to join us in driving progress—whether by participating, volunteering, or spreading the word. These initiatives are funded, in part, by generous support from Merck and the Rath Family VHL Fund.
Together, we can strengthen the VHL community, accelerate research, and ensure that no one faces this journey alone. Let’s make 2025 a year of impact and empowerment!
