Clinical Care Centers
Find a Doctor
VHL Alliance recognized Clinical Care Centers (CCCs) are committed to providing outstanding holistic, coordinated care for VHL patients.
Each CCC has a team of VHL-experienced specialists that work together towards providing VHL patients and families with the expertise, care and support that they need. There are two categories of care centers: Clinical Care Center (CCC) and Comprehensive Clinical Care Center (CCCC). In addition to existing for at least 2 years as strong CCCs, Comprehensive Clinical Care Centers (CCCCs) have been recognized for additional depth of expertise and experience treating VHL, and their dedication to a true team approach for VHL patients. These centers have also made a commitment to educating their local physician communities about VHL.
National Locations
University of Alabama at Birmingham
Contact: Tammi Skelton, FNP
Tel: 205-975-6337
E-mail: [email protected]
Mayo Clinic, Scottsdale
Contact: Amy Burgoon
Tel: 480-342-6263
E-mail: [email protected]
Website
Contact: Mayowa A. Osundiji, M.B.B.S., Ph.D.
Tel: 480-342-6263
Email: [email protected]
University of California, Los Angeles (UCLA)
Contact: Institute of Urologic Oncology Patient Coordinator
Tel: 310.794.2858
Stanford University Hospital and Clinics*
Contact: Vee Vo, Clinic Coordinator
Tel: 650.736.0262
E-mail: [email protected]
Website
ADULT AND PEDIATRIC
*Comprehensive CCC
University of Colorado, Denver
Contact: Cynthia Harvey RN, BSN
Tel: 720.848.0199
E-mail: [email protected]
University of Miami
Contact: Talia Donenberg, MS, CGC
Tel: 305.243.3627
E-mail: [email protected]
Moffitt Cancer Center, Tampa
Contact: Jen Tighe, RN
Tel: 813-745-8444
E-mail: [email protected]
University of Florida Health
Hans H. Shuhaiber, MD
Tel: 312-286-1059
E-mail: [email protected]
Georgia Cancer Center, Augusta
Contact: John W Henson, MD
Tel: 706.721.2505
E-mail: [email protected]
Loyola University Medical Center, Maywood
Contacts: Cancer Center Help (Ask for Karen or Anna)
Tel: 7083272232
Northwestern Memorial Hospital, Chicago
Contact: Brittany Szymaniak, PhD, CGC
Tel: 312.926.0409
Email: [email protected]
University of Chicago*
Contact: Jonathan Trujillo, MD
Tel: 773-702-6840
E-mail: [email protected]
ADULT AND PEDIATRIC
*Comprehensive CCC
Indiana University Medical Center, Indianapolis
Contact: Marri Hampton, RN, BSN
Tel: (317) 944-6354
Email: [email protected]
University of Iowa Hospitals & Clinics, Iowa City
Contact: Kyle Dillahunt, MS, CGC
Tel: 319.356.2675
Email: [email protected]
University of Kansas Medical Center, Kansas City
Contact: Debra Collins, MS, CGC
Tel: 913.588.3859
E-mail: [email protected]
The Johns Hopkins Hospital, Baltimore
Contact: Johns Hopkins USA
Phone (Toll Free): 1-855-695-4872
Phone: 410-464-6555
Fax: 410-464-6600
Email: [email protected]
Lahey Medical Center, Burlington
Contact: Michelle Lavery, NP
Tel: 781.744.8334
E-mail: [email protected]
Website
Massachusetts General Hospital, Boston*
Contact: Othon Iliopoulos, MD
Tel: 617.724.3404
E-mail: [email protected]
Website
*Comprehensive CCC
Henry Ford Hospital, Detroit
Contact: Arleeta Ellerbee
Tel: 313.916.5362
E-mail: [email protected]
Website
University of Michigan Medical Center, Ann Arbor*
Contact: Jenae Osborne, MS, CGC
Tel: 734.647.0822
E-mail: [email protected]
Website
*Comprehensive CCC
Mayo Clinic, Rochester
Contact: Pavel Pichurin, MD
Tel: 507.284.3215
Website
University of Minnesota, Minneapolis
Contact: Samantha Woehrle, DNP, APRN, AGCNS-BC
Tel: 612-676-4200
E-mail: [email protected]
WashU Barnes/Siteman Cancer Center, St. Louis
Contact: Katie Gettinger, CPNP
Tel: 314.454.6018
E-mail: [email protected]
Columbia University Medical Center, New York Presbyterian Hospital, New York City*
Contacts:
Katie Foudy, MS, CGC
Tel: 212-305-0190
E-mail: [email protected]
Website
ADULT AND PEDIATRIC
Memorial Sloan Kettering Cancer Center, New York City
Contact: Connie Estes RN, BSN, CAPA
Tel: 646.422.4432; Fax: 212.452.3323
Email: [email protected]
Website
Roswell Park Comprehensive Cancer Center, Buffalo
Contact: Alexandra Sanders, RN, MSN
Tel: 716.845.1300 x6781
E-mail: [email protected]
SUNY Upstate Medical University, Syracuse
Contact: Jennifer Lee
Tel: 315.464.6031; Fax: 315.464.6117
E-mail: [email protected]
*Comprehensive CCC
Levine Cancer Institute, Charlotte
Contacts:
Ashley Sumrall, MD
Tel: 980.442.5300
Email: [email protected]
Sara Elrefai, MD
Tel: 980.442.6410
Email: [email protected]
ADULT AND PEDIATRIC
University of North Carolina, Lineberger Cancer Center, Chapel Hill*
Contact: Mary Dunn, NP
E-mail: [email protected]
Website
ADULT AND PEDIATRIC
*Comprehensive CCC
Cleveland Clinic*
Contact: Abby Guerra
Tel: 216.444.5517
E-mail: [email protected]
Website
ADULT AND PEDIATRIC
Ohio State University, Wexner Medical Center, Columbus
Contact: Giavanna de LaRosa, CNP
Tel: 614.293.4448
E-mail: [email protected]
*Comprehensive CCC
Hospital of the University of Pennsylvania, Philadelphia*
Contact: Megan Lawrence
Tel: 215.662.4740
E-mail: [email protected]
Website
ADULT AND PEDIATRIC
University of Pittsburgh Medical Center
Contact: Meghan Kelley
Tel: 412.578.9429
E-mail: [email protected]
*Comprehensive CCC
St. Jude Children’s Research Hospital, Memphis**
Contact: Roya Mostafavi, MS, CGC
Tel: 901-595-0335
Email: [email protected]
Vanderbilt University Medical Center, Nashville*
Contact: James Wyatt (Adults)
Tel: 615-936-8422
Email: [email protected]
Kathy Jernigan, MSN (Pediatrics)
Tel: 615-936-1762
Email: [email protected]
*Comprehensive CCC
**Pediatric CCC
MD Anderson Cancer Center, Houston*
Contact: Rosalie Sicalag, APRN
Tel: 713-745-7575
Email: [email protected]
Website
ADULT AND PEDIATRIC
University of Texas – Health San Antonio
Natalie Poullard, MS, MA, CGC
Tel: 210.450.6327
E-mail: [email protected]
ADULT AND PEDIATRIC
University of Texas – Southwestern, Dallas
Brian Reys, MS, CGC
Amber Gemmell, MS, CGC
Remington Fenter, MS, CGC
Tel: 214.645.2563
E-mail: [email protected]
*Comprehensive CCC
Huntsman Cancer Institute, Salt Lake City*
Contact: Kristen Pauley, MS, CGC
Tel: 801.213.8449
Email: [email protected]
Website
*Comprehensive CCC
University of Virginia, Charlottesville*
Contact: Nancy Staton, RN
Tel: 434.243.2757
Email: [email protected]
Website
ADULT AND PEDIATRIC
*Comprehensive CCC
International Locations
Hospital Italiano de Buenos Aires, Buenos Aires
Contact, Adults: Valeria de Miguel, MD, Endocrinology, Metabolism and Nuclear Medicine Unit.
Tel: +541149590200, ext: 4849/8442; Fax: +541149590323
E-mail: [email protected]
Contact, Pediatrics: Gabriela Sansó, PhD.
Tel: +5441149635931, ext: 129; Fax: +541149635930
E-mail: [email protected]
Hospital Privado Centro Médico de Córdoba.
Contact: Javier de Arteaga, MD
Tel: +54-351-4688230
E-mail: [email protected]
Prince of Wales Hospital, Sydney
Hereditary Cancer Clinic.
E-mail: [email protected]
Universitair Ziekenhuis Brussel & Free University Brussels
Endocrinology and Internal Medicine
Prof. Dr. Corina Andreescu
Email: [email protected]
Contact: Freddy Raymackers
Tel: +32 (2) 801.27.01
Email: [email protected]
Toronto General Hospital, Toronto, ON.
Adults: Princess Margaret Cancer Centre, Familial Cancer Clinic
Alexandra Volenik, MSc, CGC, CCGC, Genetic Counsellor
Tel: 1.416.946.2270
Email: [email protected]
Pediatrics: Hospital for Sick Children, Cancer Genetics Program
Bailey Gallinger, MSc, CGC, Genetic Counsellor
Tel: 1.416.813.8597
Email: [email protected]
Peking University First Hospital, Beijing
Contact: Gong Kan, MD.,
Tel: +86 (10) 83575101; Fax: +86 (10) 66552211
E-mail: [email protected]
ADULT AND PEDIATRIC
Necker Hospital and Kremlin-Bicêtre Hospital, Paris
Contact: Stéphane Richard, MD
Tel/Fax: +33 (1) 49.59.67.28
E-mail: [email protected]
Website
Albert-Ludwigs University Medical Center Freiburg
Contact: Mr. Berisha
Tel: +49 (7) 61.270.34560
E-mail: [email protected]
Amrita Institute of Medical Sciences, Elamakkara Post, Kochi, Kerala
Contact: Ashok Pillai, MD
Tel: Fax: + 91.484.280.2020
E-mail: [email protected]
Sheba Medical Center. Ramat Gan
Contact: Prof Amit Tirosh
Tel: +972.3.530.9236
E-mail: [email protected]
IRCCS San Raffaele Hospital, Milan
Contact: Daniela Canibus
Tel: +39 02 2643 5628
E-mail: [email protected]
Kochi Medical School Hospital, Nankoku Kochi.
Contact: Mari Tashiro, Genetic Counselor
Department of Clinical Genetics
Tel: 088.866.5811
E-mail: [email protected]
Kyoto University Hospital – Kyoto, Japan
Contact: Masako Torishima PhD
+81-75-751-4350
Email: [email protected]
University Hospital Utrecht.
Rachel Giles, PhD, Internal Medicine.
E-mail: [email protected]
Pomeranian Academy of Medicine, Szczecin.
Contact: Karol Krzystolik, MD, Genetics.
Tel: ; Fax: +48 (91) 4828.450
E-mail: [email protected]
National Cancer Centre Singapore
Contact: Dr. Joanne Ngeow
Website: https://www.nccs.com.sg/patient-care/specialties-services/cancer-genetics-service
Email: [email protected]
Care for VHL and other genetic conditions in the UK is organized under the local genetics centres. People should begin by contacting their local centre, which will network with the major centres as necessary.
University of Cambridge
Contact: Prof. Eamonn Maher, Dept. of Medical Genetics.
Tel: +44 (0) 1223.217.054 to ring
St. Bartholomew’s Hospital, London
Contact: Ms. L. McAndrew, Neuroendocrine Clinical Nurse Specialist.
Tel: +44 (0) 203.465.7264
Email: [email protected]
Churchill Hospital, Oxford
Regional Genetics Service
Tel: +44 (0) 114.271.7025
PLEASE NOTE: All of the medical facilities listed on this page have VHL CCC teams that have been evaluated and approved by VHL specialists comprising the Clinical Advisory Council. However, not all specialists at these facilities are on the CCC team. As such, you may very well encounter a physician working at an institution with a CCC that does *not* have experience with VHL. (You may also find specialists that have some experience with VHL but are not members of the CCC team that has been evaluated by the Clinical Advisory Council.) The VHL Alliance is *only* endorsing the VHL CCC team and its members. Please make sure to communicate with the CCC’s Point of Contact to verify that you receive care from specialists that have experience caring for VHL patients.