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Did you catch Isaiah, the VHL Ninja Warrior, on NBC this week? Isaiah was competing once again on NBC's American Ninja Warrior and raising awareness for VHL! You can read more about Isaiah's story here: buff.ly/45YXkJI

As if you needed another reason to attend Family Weekend in Dallas Sept 6-8... We're headed to see the Texas Rangers play on Saturday night! Tickets will be available on a first come, first served basis to event attendees in August. Register now: buff.ly/3uEu3pd

Prior to his diagnosis, Sean had never heard of VHL—and there was no family history, leaving him searching for answers. Read more about Sean's story on Patient Worthy here: buff.ly/4bLgLH3 Recently diagnosed? We're here to help. Visit our website to get in touch ✉️

Planning to attend Family Weekend in Dallas? ✈️ Share this post to let your VHL community know that you'll be there! We can't wait to bring the VHL community together in person. Register here: buff.ly/3x64MWt

VHL Family Weekend is the perfect opportunity to learn directly from leading VHL experts like Dr. Kevin Courtney! Join us Sept 6-8 here: buff.ly/3x64MWt The price of your registration includes a welcome dinner, a day of VHL presentations, and more!

Who can relate to Nancy Rose's story? 🙋 There's still time to register for Family Weekend! Join us Sept 6-8 in Dallas for a weekend of learning directly from VHL experts and connecting with the VHL community. Register here: buff.ly/3x64MWt

Mark your calendars! It's time to start thinking about our September VHL community support calls ⏰ Learn more here: buff.ly/3UGtXHT

1/ Results from #LITESPARK-005 are out NEJM! The phase 3 trial that led to HIF-2 inhibitor Belzutifan (BEL) U.S. FDA approval Dec 2023 in pretreated pts w/ #ccRCC. Presentation #ESMO24 @myEsmo Check it out: nejm.org/doi/full/10.10…

Reducing VHL treatment cost continues to be a top priority for our community. This month, we've put together a list of four resources that can help to decrease the cost of your VHL care 📉 Read more: buff.ly/3T35NpQ

Welireg (Belzutifan) is officially approved for use in Australia! 🎉 Improving access to VHL treatment options through advocacy and education continues to be a top priority for the Alliance. Congratulations to our partners in Australia! buff.ly/3T36csm

VHL Family Weekend in Dallas is right around the corner! Secure your spot today ➡️ Registration closes at midnight on September 2nd ⏰ Register here: buff.ly/3x64MWt

Calling all VHL Researchers ☎️ Applications for the VHL Alliance Research Grant Program are open now! Since it's inception, this program has deployed more than $3 million in VHL focused research funding 😲 Application details are available here: buff.ly/3T9la01

Join the VHL Alliance for the 2024 Fall Advocacy Day on September 25! Your story and voice matter. By joining this virtual advocacy effort, you help bring us closer to breakthroughs that can save lives. Sign up by visiting: buff.ly/4gleENO

Wow - What a weekend! VHL Family Weekend in Dallas was one of the best yet. Three days of connecting with the VHL community & learning directly from leading VHL researchers! We already can't wait for next year - Any guesses where Family Weekend will be in 2025?

🚨 Oct 18-20 Ospedale San Raffaele and Università Vita-Salute San Raffaele host the International VHL Alliance Meeting! 🌍🧬 Leading global experts will dive into groundbreaking research on von Hippel-Lindau disease and #renalcancer register now🔗 vhl.org/vhla-event/16t… 🗓️ #VHLA2024 #Oncologia #Ricerca #VHL

There are already more than 100 VHL experts registered for the 16th Annual VHL Symposium in Milan Oct 19-20 This event is open to VHL clinicians, researchers, and patients alike! Click here to learn more: buff.ly/3xfgLkE

There is still time to register for the KidneyCAN virtual advocacy day on September 25. Advocacy is POWERFUL. Will you join us to help secure federal research funding for VHL? buff.ly/4gleENO

Did you know that you can donate your used car to support the VHL Alliance? We’ll reach out to you to arrange the pick-up of your vehicle donation at no cost to you 🚗 Click here to learn more: buff.ly/3B5DUr8

On September 5th 2024, the National Institute of Health & Care Excellence (NICE) published its Final Draft Guidance for NHS England with a positive recommendation for the use of Belzutifan (Welireg) under a Managed Access. Read more here: buff.ly/3BmYLGk

Don't mind us... Just busy reliving VHL Family Weekend over and over until next year 😊 Keep your eyes peeled for an announcement about Family Weekend 2025 in the coming weeks!