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: tskelton@uab.edu
Mayo Clinic, Scottsdale
Contact: Amy Burgoon
Tel: 480-342-6263
E-mail: burgoon.amy@mayo.edu
Website
Contact: Mayowa A. Osundiji, M.B.B.S., Ph.D.
Tel: 480-342-6263
Email: Osundiji.mayowa@mayo.edu
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: veevo@stanfordhealthcare.org
Website
ADULT AND PEDIATRIC
*Comprehensive CCC
University of Colorado, Denver
Contact: Cynthia Harvey RN, BSN
Tel: 720.848.0199
E-mail: Cynthia.Harvey@uchealth.org
University of Miami
Contact: Talia Donenberg, MS, CGC
Tel: 305.243.3627
E-mail: tdonenberg@med.miami.edu
Moffitt Cancer Center, Tampa
Contact: Jen Tighe, RN
Tel: 813-745-8444
E-mail: jennifer.tighe@moffitt.org
University of Florida Health
Hans H. Shuhaiber, MD
Tel: 312-286-1059
E-mail: Hans.Shuhaiber@neurology.ufl.edu
Georgia Cancer Center, Augusta
Contact: John W Henson, MD
Tel: 706.721.2505
E-mail: johenson@augusta.edu
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: brittany.szymaniak@nm.org
University of Chicago*
Contact: Jonathan Trujillo, MD
Tel: 773-702-6840
E-mail: jtrujillo@medicine.bsd.uchicago.edu
ADULT AND PEDIATRIC
*Comprehensive CCC
Indiana University Medical Center, Indianapolis
Contact: Marri Hampton, RN, BSN
Tel: (317) 944-6354
Email: mhampto2@IUHealth.org
University of Iowa Hospitals & Clinics, Iowa City
Contact: Kyle Dillahunt, MS, CGC
Tel: 319.356.2675
Email: kyle-dillahunt@uiowa.edu
University of Kansas Medical Center, Kansas City
Contact: Debra Collins, MS, CGC
Tel: 913.588.3859
E-mail: dcollins@kumc.edu
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: JHUSA@jhmi.edu
Lahey Medical Center, Burlington
Contact: Michelle Lavery, NP
Tel: 781.744.8334
E-mail: michelle.a.lavery@lahey.org
Website
Massachusetts General Hospital, Boston*
Contact: Othon Iliopoulos, MD
Tel: 617.724.3404
E-mail: iliopoul@helix.mgh.harvard.edu
Website
*Comprehensive CCC
Henry Ford Hospital, Detroit
Contact: Arleeta Ellerbee
Tel: 313.916.5362
E-mail: aellerb1@hfhs.org
Website
University of Michigan Medical Center, Ann Arbor*
Contact: Jenae Osborne, MS, CGC
Tel: 734.647.0822
E-mail: jenaej@umich.edu
Website
*Comprehensive CCC
Mayo Clinic, Rochester
Contact: Pavel Pichurin, MD
Tel: 507.284.3215
Website
University of Minnesota, Minneapolis
Contact: Denise Musser, APRN-CNS
Tel: 612.626.9898
E-mail: dmusser10@umphysicians.umn.edu
WashU Barnes/Siteman Cancer Center, St. Louis
Contact: Katie Gettinger, CPNP
Tel: 314.454.6018
E-mail: gettinger_k@wustl.edu
Columbia University Medical Center, New York Presbyterian Hospital, New York City*
Contacts:
Katie Foudy, MS, CGC
Tel: 212-305-0190
E-mail: kaf2206@cumc.columbia.edu
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: estesc@mskcc.org
Website
Roswell Park Comprehensive Cancer Center, Buffalo
Contact: Alexandra Sanders, RN, MSN
Tel: 716.845.1300 x6781
E-mail: alexandra.sanders@roswellpark.org
SUNY Upstate Medical University, Syracuse
Contact: Jennifer Lee
Tel: 315.464.6031; Fax: 315.464.6117
E-mail: LeejeN@upstate.edu
*Comprehensive CCC
Levine Cancer Institute, Charlotte
Contacts:
Ashley Sumrall, MD
Tel: 980.442.5300
Email: ashley.sumrall@atriumhealth.org
Sara Elrefai, MD
Tel: 980.442.6410
Email: sara.elrefai@atriumhealth.org
ADULT AND PEDIATRIC
University of North Carolina, Lineberger Cancer Center, Chapel Hill*
Contact: Mary Dunn, NP
E-mail: mwdunn@med.unc.edu
Website
ADULT AND PEDIATRIC
*Comprehensive CCC
Cleveland Clinic*
Contact: Abby Guerra
Tel: 216.444.5517
E-mail: guerraa@ccf.org
Website
ADULT AND PEDIATRIC
Ohio State University, Wexner Medical Center, Columbus
Contact: Giavanna de LaRosa, CNP
Tel: 614.293.4448
E-mail: Giavanna.deLaRosa@osumc.edu
*Comprehensive CCC
Hospital of the University of Pennsylvania, Philadelphia*
Contact: Megan Lawrence
Tel: 215.662.4740
E-mail: Megan.Lawrence@pennmedicine.upenn.edu
Website
ADULT AND PEDIATRIC
University of Pittsburgh Medical Center
Contact: Meghan Kelley
Tel: 412.578.9429
E-mail: hilkoml@upmc.edu
*Comprehensive CCC
St. Jude Children’s Research Hospital, Memphis**
Contact: Roya Mostafavi, MS, CGC
Tel: 901-595-0335
Email: Roya.Mostafavi@stjude.org
Vanderbilt University Medical Center, Nashville*
Contact: James Wyatt (Adults)
Tel: 615-936-8422
Email: james.wyatt@vumc.org
Kathy Jernigan, MSN (Pediatrics)
Tel: 615-936-1762
Email: Kathryn.g.jernigan@vumc.org
*Comprehensive CCC
**Pediatric CCC
MD Anderson Cancer Center, Houston*
Contact: Rosalie Sicalag, APRN
Tel: 713-745-7575
Email: rlsicalag@mdanderson.org
Website
ADULT AND PEDIATRIC
University of Texas – Health San Antonio
Natalie Poullard, MS, MA, CGC
Tel: 210.450.6327
E-mail: poullard@uthscsa.edu
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: CancerGenetics@UTSouthwestern.edu
*Comprehensive CCC
Huntsman Cancer Institute, Salt Lake City*
Contact: Kristen Pauley, MS, CGC
Tel: 801.213.8449
Email: VHLClinic@hci.utah.edu
Website
*Comprehensive CCC
University of Virginia, Charlottesville*
Contact: Nancy Staton, RN
Tel: 434.243.2757
Email: vhlsurgery@virginia.edu
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: valeria.demiguel@hospitalitaliano.org.ar
Contact, Pediatrics: Gabriela Sansó, PhD.
Tel: +5441149635931, ext: 129; Fax: +541149635930
E-mail: gsanso@cedie.org.ar
Hospital Privado Centro Médico de Córdoba.
Contact: Javier de Arteaga, MD
Tel: +54-351-4688230
E-mail: javierdearteaga@gmail.com
Prince of Wales Hospital, Sydney
Hereditary Cancer Clinic.
E-mail: HCC@health.nsw.gov.au
Universitair Ziekenhuis Brussel & Free University Brussels
Endocrinology and Internal Medicine
Prof. Dr. Corina Andreescu
Email: corina.andreescu@uzbrussel.be
Contact: Freddy Raymackers
Tel: +32 (2) 801.27.01
Email: vonhippellindau@uzbrussel.be
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: alexandra.volenik@uhn.ca
Pediatrics: Hospital for Sick Children, Cancer Genetics Program
Bailey Gallinger, MSc, CGC, Genetic Counsellor
Tel: 1.416.813.8597
Email: bailey.gallinger@sickkids.ca
Peking University First Hospital, Beijing
Contact: Gong Kan, MD.,
Tel: +86 (10) 83575101; Fax: +86 (10) 66552211
E-mail: gongkan2013@163.com
ADULT AND PEDIATRIC
Necker Hospital and Kremlin-Bicêtre Hospital, Paris
Contact: Stéphane Richard, MD
Tel/Fax: +33 (1) 49.59.67.28
E-mail: stephane.richard@universite-paris-saclay.fr
Website
Albert-Ludwigs University Medical Center Freiburg
Contact: Mr. Berisha
Tel: +49 (7) 61.270.34560
E-mail: med-vhl@uniklinik-freiburg.de
Amrita Institute of Medical Sciences, Elamakkara Post, Kochi, Kerala
Contact: Ashok Pillai, MD
Tel: Fax: + 91.484.280.2020
E-mail: brashok@aims.amrita.edu
Sheba Medical Center. Ramat Gan
Contact: Liat Arnon
Tel: +972 (0)54.737.6886
E-mail: Liat.Arnon@sheba.health.gov.il
IRCCS San Raffaele Hospital, Milan
Contact: Daniela Canibus
Tel: +39 02 2643 5628
E-mail: vhl@hsr.it
Kochi Medical School Hospital, Nankoku Kochi.
Contact: Mari Tashiro, Genetic Counselor
Department of Clinical Genetics
Tel: 088.866.5811
E-mail: jm-m.tashiro@kochi-u.ac.jp
Kyoto University Hospital – Kyoto, Japan
Contact: Masako Torishima PhD
+81-75-751-4350
Email: mtori@kuhp.kyoto-u.ac.jp
University Hospital Utrecht.
Rachel Giles, PhD, Internal Medicine.
E-mail: r.giles@umcutrecht.nl
Pomeranian Academy of Medicine, Szczecin.
Contact: Karol Krzystolik, MD, Genetics.
Tel: ; Fax: +48 (91) 4828.450
E-mail: poland@vhl.org
National Cancer Centre Singapore
Contact: Min-Han Tan, MD, PhD, Medical Oncology.
Tel: +65.6436.8000
Email: tan.min.han@nccs.com.sg, minhan.tan@gmail.com
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: Lorraine.mcandrew@bartshealth.nhs.uk
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.