Summary
Organization name
VHL Alliance
Causes
Health Care
Operating Budget
$1,000,000 - $2,999,999
Counties Served
Dallas, Denton, Fannin, Tarrant
BIPOC Leadership
Board Chair
Address
1505 Warren DriveDeSoto, TX 75115
About
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North Texas has the second highest concentration of VHL activity in the U.S.
The VHL Alliance is the leading patient advocacy nonprofit serving Americans with von Hippel Lindau (VHL) through education, connections to clinical opportunities, and raising critical funds to Cure Cancer Through VHL.
We are a mighty team who passionately organizes the VHL community of families, clinicians, researchers, and partners to bring about real change that results in better health outcomes for all individuals with VHL.
Help us bring this change to impacted families in Dallas / Fort Worth and the surrounding counties.
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We all have a VHL gene. When that gene mutates, our bodies ability to suppress certain tumors goes away. Someone with VHL will have a lifetime of tumor growth throughout the body which could lead to cancer, loss of sight, or loss of mobility. Click on Willem Dafoe to hear about VHL.
Did You Know...
North Texas has the second highest concentration of VHL Activity in the U.S. There are over 600 Individuals with VHL and an estimated 3,300 likely undiagnosed in Dallas/ Fort Worth and the surrounding counties.
UT Southwestern is among the 40+ VHL Centers of Excellence providing world class comprehensive and coordinated VHL care and partnering with the VHL Alliance for VHL Connect - Dallas
VHL Research has led to NINE lifesaving cancer drugs - this includes a 2021 FDA approved therapy that CHANGES THE GAME for VHL patients and millions of individuals with kidney and neuroendocrine cancer. The VHL Alliance is the largest private citizen funder of VHL Research, setting aside $300,000 annually for research projects around the world.
The VHL Alliance (VHLA) is the singular patient advocacy nonprofit in the U.S. that supports the estimated 10,000 Americans who navigate VHL through educational events and resources, building a community of empowered families and connecting them to a network of VHL informed clinicians.
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Partner with us to grow the VHL Community in North Texas
VHL Connect - Dallas will partner with UT Southwestern to empower patients in December of 2026
Hundreds of individuals from DFW are missing out on life saving therapies. Raising awareness of VHL and increasing access to VHL clinical opportunities is our north star
Learn more at www.vhl.org
Giving Activity
Mission
NO ONE NEEDS TO FACE VHL ALONE.
Since 1993, the VHL Alliance (VHLA) has empowered the VHL Community through connection, education, wellness, and research - ensuring a healthier future for every patient
OUR SIGNATURE PROGRAMS
VHL Handbooks, Webinars, and digital libraries
Wellness coaching and support groups
In person events bringing families, clinicians, and researchers together to improve health outcomes for all VHL patients
Needs
HELP US GROW THE VHL COMMUNITY IN NORTH TEXAS
Bringing together VHL families and the clinicians who care for them is what drives better health outcomes. Your support will help the VHLA host VHL Connect - Dallas 2026 alongside our partner UTSW
HELP US RAISE AWARENESS OF VHL IN UNDERSERVED DFW COMMUNITIES
Over 3,300 individuals are likely undiagnosed with VHL. New treatments can significantly impact qualities of life for so many, especially those who fall through the medical cracks. Your support will educate both patients and primary care medical professionals and SAVE LIVES
Media gallery
Organization Data
DeSoto, TX 75115