VHL Alliance
@VHLAlliance
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We are a non-profit support organization for patients and families affected by von Hippel-Lindau disease (VHL).
Boston, MA
Joined June 2011
Did you know? Giving Tuesday is December 2nd. This year, we’re inviting you to be part of our Giving Tuesday efforts in two ways: 1. Make a gift of any size to support VHL patients and families. 2. Share your story on social media. Stay tuned for more exciting news next week!
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As we enter this season of gratitude, all of us at the VHL Alliance want to say THANK YOU! Our work is only possible because of you. Your generosity, your involvement, and your commitment to the VHL community. Thank you!
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Earlier this month, the VHL Alliance hosted its first-ever VHL Research Forum in NC. This event brought together a group of leading VHL researchers for a weekend centered around one question: What will it take to change the future of VHL? https://t.co/GLnTiSkGt5
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Thank you to Merck for their generous support of our VHL Webinar Series. Your partnership helps us bring trusted information and expert insights to the VHL community! #VHLAwareness #VHLWebinar
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Have you registered for our Nov 17 webinar yet 👀 Join us as we discuss the importance of coordinated care in VHL treatment alongside leading VHL experts from UT Southwestern Medical Center’s Harold C. Simmons Comprehensive Cancer Center. Register now: https://t.co/PVaoIiVEaC
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Today, we honor and thank all Veterans & their families for their service and sacrifice. We are grateful for the Veterans and military families within the VHL community. Thank you!
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Our partners at KidneyCan are hosting a webinar on Thursday, November 13th @ 2 pm ET! This session will focus on the role oncology nurses play in kidney cancer treatment. Register here:
kidneycan.org
Oncology nurses play a key role in kidney cancer treatment, helping patients understand their diagnosis and advocate for care.
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What: VHL Connect: Atlanta Date: Saturday, December 6, 2025 Time: 8:30 AM – 2:00 PM EST (Registration begins at ~8:00 AM) Location: 2301 Sullivan Rd, College Park, GA 30337 Cost: $10 (includes lunch and refreshments) Learn more here: https://t.co/EI7Ho0hadq
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Congratulations to our partners at VHL Association Poland for their recent incorporation. We are so excited to support your advocacy & Welireg accessibility efforts! #VHLAwareness
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Join us for an upcoming webinar, “The Importance of Coordinated Care in Addressing VHL,” featuring experts from UT Southwestern Medical Center’s Harold C. Simmons Comprehensive Cancer Center. Nov 17th at 3 pm CST // 4 pm EST! Register now: https://t.co/PVaoIiVEaC
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We were happy to represent the VHL Alliance at the NORD Breakthrough Summit on October 19-21 in Washington, DC! Thank you to our partners at NORD for a wonderful event! #rarediseases #vhlawareness
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Our latest blog post outlines the VHLA Tumor Board, an initiative that brings together medical professionals from around the world to collaborate on real VHL cases, ensuring every clinician has access to expert insights. Read more: https://t.co/1mGVCf416c
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Mark Your Calendars! VHL Family Weekend Returns August 7–9, 2026 We’re thrilled to announce that VHL Family Weekend 2026 will take place August 7–9 in Los Angeles, California, in partnership with the UCLA Clinical Care Center team! Registration link to come soon!
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Big discoveries often start with small questions. This Harvard Gazette story dives into Dr. William Kaelin’s groundbreaking work on how cells sense oxygen - research that opened doors to understanding VHL and led to treatment options for patients. https://t.co/gmet2dF40W
news.harvard.edu
William Kaelin pursued his Nobel-winning findings — which led to new treatments for kidney cancer — with a fisherman's instinct.
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Meet Julia With One Eye (I) - A VHL patient and TikToker who has amassed more than 30k followers and 1 million likes by sharing her VHL journey! Read more about Julia here: https://t.co/QT14CiVM31 Follow Julia on TikTok here: https://t.co/ErAy3SNVJJ
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Family Weekend is one of the most impactful events of the year. We already can't wait for 2026 - Keep your eyes peeled for more info coming soon! #vhlfamilyweekend #vhlawareness
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Have an old car, truck, or even a boat? Donate it to the VHL Alliance! Free pick-up, possible tax deduction, and the chance to support patient programs, research, and more. Learn more here: https://t.co/rvFRwWFcQy
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Did you know that September 30th is Rare Cancer Day? Research into rare diseases like VHL can have a massive impact. VHL Research alone has led to the development of NINE lifesaving cancer drugs! #RareCancerDay #VHLResearch #VHLAwareness
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Are you already part of our facebook group? 👋 In our most recent blog post, Julia shares her VHL story and her experience documenting her life on TikTok as Julia With One Eye (I). Read more here: https://t.co/QT14CiVM31
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Did you know? The VHL Alliance offers monthly support calls to bring together people living with VHL, caregivers, and loved ones. Sign up using the link below and you’ll automatically receive reminders and Zoom links for each call. https://t.co/Ilh0edgn2K
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