What to Expect
Patients referred to the UNC Von Hippel-Lindau Clinical Care Center are seen by a multidisciplinary team of clinicians. The visit includes a formal UNC evaluation of prior pathology, imaging, and outside medical records. The team provides a consensus opinion regarding the best treatment plan for the individual patient. Additional specialists are consulted as needed to complete the patient care plan. Dedicated program coordinators and nurse navigators guide the complex care delivered to our patients by facilitating information intake, scheduling all tests and follow-up visits, and ensuring clear communication to referring health care providers.
New patients will be seen by Dr. KimRathmell and referred to other providers as appropriate. Follow-up care will be provided by Mary Dunn, NP in the VHL Clinic on the second Friday of each month.
Each patient will receive a detailed, individualized Treatment Summary and Care Plan.
The goals of the Clinical Care Program of the VHL Family Alliance are:
- To improve diagnosis and treatment of VHL syndrome
- To provide coordination of care across medical specialties
- To provide resource centers for patients and physicians who are new to VHL
- To provide a ready channel for communicating advances to these centers of expertise
- To provide a model which can be replicated elsewhere.
For more information about the VHL Family Alliance, please visit their website, www.vhl.org.