vhl alliance

Clinical Care Centers Directory

US Clinical Care Centers are committed to providing outstanding holistic, coordinated care for VHL patients. They have been established at academic medical centers to provide ongoing care for local patients, meet the specialty care needs of patients who must travel to the center, and serve as a local resource for patients who are attending college or traveling. Each center has specialists to meet both VHL surveillance and treatment needs. The centers also provide emotional health screening and will follow up with the patient’s local primary care physician who can refer to appropriate local professionals. Become a CCC  

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.

Alabama

University of Alabama at Birmingham
Contact: Ashley Cannon, MS, CGC, Dept. of Genetics
Tel: 205.996.2916
E-mail: ashleycannon@uabmc.edu
Website

Arizona

Mayo Clinic, Scottsdale
Contact: Katherine S. Hunt, MS, CGC
Tel. 480.342.4800; Fax: 480.301.6356
E-mail: hunt.katherine@mayo.edu
Website

California

University of California, Los Angeles (UCLA)
Contact: Donicia Collins
Tel: 310.206.5930
E-mail: dcollins@mednet.ucla.edu

Colorado

University of Colorado, Denver
Contact: Heather Thompson, MSN
Tel: 720.848.8570
E-mail: Heather.Thompson@uchealth.org

Florida

University of Miami
Contact: Talia Donenberg, MS, CGC
Tel: 305.243.3627; Fax: 305.243.3919
E-mail: tdonenberg@med.miami.edu

Moffitt Cancer Center, Tampa
Contact: Jenni Ocampo, RN, BSN
Primary Nurse for Dr. Spiess – GU Clinic
Tel: 813.745.8119; Fax: 813.449.6726
E-mail: Jennilene.Ocampo@moffitt.org

Indiana

Indiana University, Simon Cancer Center, Indianapolis
Contact: Amy Tennant, RN, BSN, Kidney Cancer Services Clinic
Tel: 317.962.0867
Email: atennant1@IUHealth.org

Iowa

University of Iowa Hospitals & Clinics, Iowa City
Contact: Joni Bosch, ARNP
Tel: 319.356.4686; Fax: 319.356.3347
E-mail: joni-bosch@uiowa.edu
Or
Contact: Jenny Johnson, DNP, RN
Tel: 319.467.8147; Fax: 319.356.3347
E-mail: jennifer-k-johnson@uiowa.edu

Kansas

University of Kansas Medical Center, Kansas City
Contact: Debra L. Collins, MS, CGC
Tel: 913.588.3671; Fax: 913.588.4060
E-mail: dcollins@kumc.edu
Or
Contact: Anastasia Harding, APRN, FNPBC (for neuro)
Tel: 913.574.1049
E-mail: Aharding2@kumc.edu

Maryland

Johns Hopkins Hospital, Baltimore
Contact: Kelly Jackson, Senior Medical Concierge
Tel: 410.464.6555 x309
Email: kjacks72@jhmi.edu
Website

Massachusetts

Lahey Clinic Medical Center, Burlington
Contact: Bonney Myles. Tel: 781.744.2511; Fax: 781.564.5429
E-mail: bonney.myles@lahey.org
Website

Minnesota

Mayo Clinic, Rochester
Contact: Dr. Pavel Pichurin, Medical Genetics
Tel: 507.284.3215; Fax: 507.284.1067
Website

University of Minnesota, Minneapolis
Contact: Denise C. Musser, APRN-CNS
Tel: 612.626.9898; Fax: 612.625.4406
E-mail: dmusser10@umphysicians.umn.edu

Missouri

The Alvin J. Siteman Cancer Center (SCC) at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis
Contact: Kim Mullen
Tel: 314.454.8775; Fax: 314.454.5244
E-mail: mullenk@wudosis.wustl.edu

New York

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

Montefiore Einstein Center for Cancer Care, Bronx
Contact: Monique White, NP-C
Tel: 718.862.8840 ext 236; Fax: 718.862.8852
E-mail: mnwhite@montefiore.org

SUNY Upstate Medical University, Syracuse
Contact: Jennifer Lee
Tel: 315-464-6031; Fax: 315-464-6117
E-mail: LeejeN@upstate.edu

Ohio

Ohio State University Wexner Medical Center
Contact: Martha Lewis-Hanna, NP
Tel: 614.293-4448
E-mail: Martha.Lewis-Hanna@osumc.edu

Pennsylvania

University of Pittsburgh, Pittsburgh
Contact: Darcy Thull, MS, CGC
Tel: 800.454.8156 or 412-641.1466; Fax: 412-641.1132
E-mail: dthull@mail.magee.edu

Utah

Huntsman Cancer Institute, Salt Lake City
Contact: Samantha Greenberg, MS, MPH, CGC
Tel: 801.213.5774; Fax: 801.585.5763
Email: VHLClinic@hci.utah.edu
Website