This year, in partnership with select VHL Clinical Care Centers, the VHL Alliance is piloting a new program called VHL Connect, an initiative aimed at empowering families affected by von Hippel-Lindau (VHL). These in-person events are designed to provide valuable resources, foster community connections, and enhance relationships between patients, families, and VHL Clinicians.
What is VHL Connect?
While each VHL Connect event is slightly different depending on the host, all will include:
- An overview of the tools, information, and support available through the VHL Alliance.
- Insights into local clinical care services and resources.
- An opportunity for attendees to ask questions and engage directly with VHL Clinicians and peers.
- A chance to network, share experiences, and build relationships within the VHL community.
- Best of all, all VHL Connect events are 100% free to attend!
Upcoming Events:
MD Anderson Cancer Center | Houston, TX
- Date: May 3, 2025
- Location: MD Anderson Cancer Center, Zayed Ballroom – Z2.4040, Rooms 1-6, 6565 MD Anderson Blvd, Houston, TX 77030
- Time: 8:00 AM – 1:00 PM
- Registration: Register Here
UPenn Medicine | Philadelphia, PA
- Date: May 16, 2025
- Location: Perelman Center for Advanced Medicine, 3400 Civic Center Blvd, Philadelphia, PA 19104
- Time: 10:00 AM – 2:00 PM
- Registration: Not required
Huntsman Cancer Institute | Salt Lake City, UT
- Date: May 31, 2025
- Location: Huntsman Cancer Institute Research South Building, First Floor Auditorium, 1950 Circle of Hope, Salt Lake City, UT 84112
- Time: 10:00 AM – 2:00 PM
- Registration: Register Here
Mass General Hospital | Boston, MA
- Date: June 14, 2025
- Location: Simches Center, 185 Cambridge St, Boston, MA 02114
- Time: 9:00 AM – 1:00 PM
- Registration: Register Here
Why Attend VHL Connect?
VHL Connect is designed with you in mind – whether you’re living with VHL, supporting a loved one, or simply looking to connect with others who understand the journey. You can expect:
- To walk away with reliable information and resources to help you better understand VHL and take charge of your care.
- To meet others in your area who truly get it. Whether it’s your first time connecting or you’re reuniting with familiar faces, you’ll be surrounded by support and community.
- To connect face-to-face with the teams at your local Clinical Care Center. Ask questions, get to know the experts, and learn more about the care options available to you.
“Join us for VHL Connect! It will be an incredible opportunity for VHL patients and families to gain empowering knowledge, find strength in a community that truly understands, and connect directly with dedicated clinical experts. Don’t miss this chance to learn, share, and thrive together!”
– Joshua Mann, MPH – VHLA Director of Health
This Article was brought to you, in part, by Merck
