Managing VHL disease requires a patient-centric
and multidisciplinary approach1–6
As patients with VHL disease may develop recurring tumors in multiple organs, it is critical to begin ongoing care with a multidisciplinary team as early as possible.
VHL Clinical Care Centers offer specialized care
There are ~40 VHL Clinical Care Centers in the United States that are committed to providing coordinated care for patients with VHL disease.7
There are ~40 VHL Clinical Care Centers in the United States that are committed to providing coordinated care for patients with VHL disease.3
- These specialized centers, often with systems or processes that are already
established, offer multidisciplinary teams coordinated by a specialist with extensive knowledge about VHL disease and its clinical manifestations.
~40
VHL Clinical Care
Centers
~40 VHL Clinical Care Centers
Managing VHL disease is a complex and lifelong effort2,8
The chronic, recurring, and unpredictable nature of VHL disease subjects patients to a lifetime of monitoring and multiple medical interventions.2-4
Regular
HCP Visits
Annual exams with
multiple specialists2,9
Regular
Radiologic Exams
Radiologic surveillance of the brain,
spinal cord, and other vital organs2,9
Management and Monitoring
Interventions and surgery as needed10
VHL = von Hippel-Lindau; HCP = health care professional.
References: 1. Zhao K, Barkley TW Jr. Von Hippel-Lindau: Current evidence in diagnosis, treatment, and nursing implications. Clin J Oncol Nurs. 2015;19(6):E121–E125. 2. Varshney N, Kebede AA, Owusu-Dapaah H, et al. A review of von Hippel-Lindau syndrome. J Kidney Cancer VHL. 2017;4(3):20–29. 3. Larcher A, Belladelli F, Fallara G, et al. Multidisciplinary management of patients diagnosed with von Hippel-Lindau disease: a practical review of the literature for clinicians. Asian J Urol. 2022;9(4):430-442. doi:10.1016/j.ajur.2022.08.002. 4. Ganeshan D, Menias CO, Pickhardt PJ, et al. Tumors in von Hippel-Lindau syndrome: from head to toe-comprehensive state-of-the-art review. Radiographics. 2018;38(3):849-866. doi:10.1148/rg.2018170156. 5. Binderup MLM, Smerdel M, Borgwadt L, et al. von Hippel-Lindau disease: updated guideline for diagnosis and surveillance. Eur J Med Genet. 2022;65(8):104538. doi:10.1016/j.ejmg.2022.104538. 6. Wolters WPG, Dreijerink KMA, Giles RH, et al. Multidisciplinary integrated care pathway for von Hippel-Lindau disease. Cancer. 2022;128(15):2871-2879. doi:10.1002/cncr.34265. 7. VHL Alliance. US Clinical Care Centers Directory. VHL Alliance. Accessed October 8, 2024. https://vhl.org/care-treatment/clinical-care-centers/. 8. VHL Alliance. Living with VHL. https://www.vhl.org/wp-content/uploads/forms/vhla-living-with-healthy-lifestyle.pdf. Accessed August 14, 2024. 9. VHL Alliance. VHLA suggested active surveillance guidelines. https://vhl.org/wp-content/uploads/forms/vhla-active-surveillance-guidelines.pdf. Accessed April 25, 2024. 10. Feletti A, Anglani M, Scarpa B, et al. Von Hippel-Lindau disease: an evaluation of natural history and functional disability. Neuro Oncol. 2016;18(7):1011-1020.
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