When: August 1-3, 2025

Where: University of Michigan, Ann Arbor, MI

The VHL Alliance invites you to join us for our annual Family Weekend, a unique opportunity to connect with the VHL community, hear from leading experts, and share experiences with others impacted by von Hippel-Lindau (VHL) disease. This year, we’re thrilled to partner with the University of Michigan to host the event in beautiful Ann Arbor.

What to Expect:

• Educational Sessions: Learn the latest in VHL research, treatments, and patient care from top medical professionals.
• Community Building: Meet and bond with families with lived experience and supporters of the VHL community
• Interactive Workshops: Participate in hands-on activities and discussions tailored to help navigate the challenges of living with VHL.
• Kid-Friendly Activities: Fun, supervised programs for children, making this event enjoyable for all ages.

Who Should Attend:

• Individuals and families living with VHL
• Medical professionals and researchers
• Caregivers, advocates, and supporters

Whether this is your first Family Weekend or you join us every year, Family Weekend always promises to inspire, inform, and connect. Come be part of a supportive community that understands the unique challenges of living with VHL.

Tickets are available for only $50 – Click here to secure your spot!

• Please note that we require a registration for every person who plans to attend Family Weekend
• Your ticket price includes a welcome dinner on Friday night and additional activities throughout the weekend!

FRIDAY
Michigan Stadium

5:00 PM – FAMILY WEEKEND KICKOFF!
We’ll start our weekend with a tour of the famed University of Michigan football stadium, aka The Big House, and get a peek at game day locker rooms, the media room, and of course a run through the tunnel onto the field!!

6:30 PM – Team VHLA Tailgate!
What is a trip to the Big House without a tailgate?! Food, fun, games, and a chance to greet old friends and meet new ones!

SATURDAY
University of Michigan Campus, Palmer Commons

8:30 AM – 3:30 PM
Saturday will be spent with top VHL Physicians and Clinicians discussing VHL, research, treatments, and wellness. Lunch will be provided.

Saturday Evening
More info to come on evening activities soon!

SUNDAY
The Graduate Hotel

8:30 AM: Wellness Walk & Community Breakfast
9:30 AM: Emotional & mental support breakout session
10:30 AM: Managing medical finances breakout session
Noon: Conclusion

Lodging:

We recommend staying at The Graduate hotel in Ann Arbor.

*Please note that we cannot guarantee that we can accommodate dietary requests received after July 7th*

Mark your calendars, and stay tuned for more details, including the agenda and guest speakers. We can’t wait to see you there!

Want to attend VHL Family Weekend 2025 in Ann Arbor, Michigan, but worried about travel costs? We’re here to help!

The VHL Alliance is offering travel scholarships of up to $500 to help make this special weekend accessible to as many families as possible. Apply by June 12 to be considered. Click here to apply now!

Please direct any questions about this event to [email protected]

This event is brought to you with support from