Living with von Hippel-Lindau (VHL) disease often means navigating a complex healthcare landscape. Because VHL can impact multiple organ systems, finding a medical team that understands the nuances of this rare condition is paramount to managing your health proactively. The VHL Alliance recognized early on that coordination of care across medical specialties, not just clinical expertise, provides the best prognosis and outcomes for VHL patients. That is why the VHL Clinical Care Network was established: to improve diagnosis and treatment and empower patients to access the expert care they deserve.
The goal of the VHL Clinical Care Network is to ensure that no matter where you live, you have pathways to connect with specialists who know exactly what VHL is and how to treat it. To achieve this, the VHL Alliance has developed three specific recognitions within the network, each designed to meet patients where they are.
First, there are Clinical Care Centers (CCCs). These are high-volume institutions that have demonstrated a profound commitment to providing outstanding, holistic, and coordinated VHL care. A CCC houses a dedicated, multidisciplinary team of specialists who work seamlessly together. They act as a comprehensive resource, ensuring you receive routine screening, treatment, and follow-up without having to explain your diagnosis at every appointment.
Next are Clinical Affiliates (CAs). Like our CCCs, Clinical Affiliates are institutions committed to offering highly coordinated care for VHL patients. They expand our footprint, ensuring that more regions have structured teams equipped with the specialized knowledge required to monitor and treat VHL. They play a critical role in bringing multidisciplinary care closer to home.
Finally, we recognize Clinical Partners (CPs). We know that not every patient has the ability to easily access a full center or affiliate. Clinical Partners are individual, VHL-experienced specialists nationwide who provide expert care within their specific medical fields. They serve as vital lifelines, advising patients, their families, and even local healthcare providers on the best practices for surveillance and targeted treatment.
We are thrilled to announce that our network is growing, bringing dedicated expertise to even more communities.
Please join us in welcoming the Medical University of South Carolina (MUSC) as our newest Clinical Affiliate. Under the leadership of Thai Ho, MD, PhD, the team at MUSC is stepping up to provide robust, coordinated care for the VHL community in the Southeast. Dr. Ho and his colleagues understand the intricate, multidisciplinary management that VHL requires, and their inclusion in the network represents a major milestone in our mission to expand regional access.
We are also incredibly proud to welcome Dr. Wendy Raskind at the University of Washington as a new Clinical Partner. For patients in the Pacific Northwest, having an individual specialist recognized for their VHL expertise provides immense peace of mind. Dr. Raskind’s dedication ensures that patients have a trusted advocate and expert to help guide their surveillance and treatment plans.
When managing a complex condition, you should never have to feel like you are the one teaching your doctor about your health. Seeing a provider who is well versed in the latest surveillance guidelines and treatment options makes a tangible difference in health outcomes and quality of life. The physicians and coordinators within our network communicate regularly with the VHL Alliance and each other, ensuring they are at the forefront of the latest advances and clinical trials.
If you or a loved one is navigating a VHL diagnosis, we strongly encourage you to seek care with a recognized provider in the VHL Clinical Care Network. Whether it is a full center, an affiliate, or an individual partner, these dedicated professionals are here to support your journey.
Take the next step in managing your health by finding a recognized provider near you. Please visit vhl.org/ccc to explore the interactive directory and connect with the expert care you deserve. Together, we are building a future where comprehensive VHL care is always within reach.
Need help navigating your VHL journey? Reach out to our team at [email protected]. We are here to help!
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