Monitoring VHL is a
lifelong effort1

The recurring and systemic nature of VHL subjects patients to
diligent surveillance as well as multiple surgeries and
interventions over
their lifetime.2

Regular
HCP Visits

Annual exams with
multiple specialists2,3

Regular
Radiologic Exams

Radiologic surveillance of the brain,
spinal cord, and other vital organs2,3

Management and Monitoring

Interventions and surgery as needed4

Monitoring VHL disease
is a team effort2,5

Due to the systemic nature of VHL disease, patient care requires specialists across the health care spectrum.

Oncologists Endocrinologists Neurologists Urologists Medical Geneticists Genetic Counselors Nurse Practitioners Neurosurgeons Surgeons Ophthalmologists
Oncologists Endocrinologists Neurosurgeons Neurologists Medical Geneticists Urologists Surgeons Genetic Counselors Ophthalmologists Nurse Practitioners

VHL Clinical Care Centers offer specialized care

There are more than 35 VHL Clinical Care Centers in the United States that are committed to providing coordinated care for patients with VHL disease.

  • 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.6

35
VHL Clinical Care
Centers

Caregivers of patients with
VHL disease face unique
challenges

Due to the systemic and cyclical nature of VHL, patients endure a lifetime of monitoring and medical interventions.2,7-10

According to a 2018 report of the National Alliance for Caregiving, the unique demands of caring for loved ones with rare diseases, such as VHL disease, have the potential to disrupt caregivers’ lives beyond their care commitments.11

Patients may have concerns about8,12:
  • New tumors
  • Family members who may share VHL disease heredity
  • Surgical interventions

VHL = Von Hippel-Lindau; HCP = health care professional.

Explore the mechanism of VHL disease

References: 1. VHL Alliance. Living with VHL. https://www.vhl.org/patients/living-with-vhl/. Accessed September 7, 2022. 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. VHL Alliance. VHLA suggested active surveillance guidelines. https://www.vhl.org/wp-content/uploads/2020/10/Active-Surveillance-Guidelines-2020.pdf. Accessed September 7, 2022. 4. 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. 5. 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. 6. VHL Alliance. US Clinical Care Centers Directory. https://www.vhl.org/about/resources/
clinical-care-centers-directory/us-clinical-care-centers/. Accessed September 7, 2022. 7. Kasparian NA, Rutstein A, Samson-Daly UM, et al. Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel-Lindau disease. Eur J Hum Genet. 2015;23:34–40. 8. Lammens CRM, Bleiker EMA, Verhoef S, et al. Psychosocial impact of Von Hippel–Lindau disease: levels and sources of distress. Clin Genet. 2010;77:483–491. 9. Ploussard G, Droupy S, Ferlicot S, et al. Local recurrence after nephron-sparing surgery in von Hippel-Lindau disease. Urology. 2007;70(3):435–439. 10. VHL Alliance. What is VHL? Manifestations. https://www.vhl.org/
patients/what-is-vhl/types-and-manifestations. Accessed September 7, 2022. 11. National Alliance for Caregiving. Rare disease caregiving in America. https://www.caregiving.org/wp-content/uploads/2020/05/NAC-RareDiseaseReport_February-2018_WEB.pdf. Accessed September 7, 2022. 12. Siston AK: The emotional roller coaster: psychosocial challenges faced by patients with VHL and techniques to manage them. 2015 VHL Patient/Caregiver Annual Meeting; October 17, 2015. VHL Alliance website. https://www.vhl.org/wp-content/uploads/2015/11/Siston-VHL_2015_DISCUSSION.pdf. Accessed September 7, 2022.

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