Centers that Provide Surveillance and Management for Individuals with LFS – These Centers have dedicated clinics and/or providers that follow individuals with LFS.
Division of Cancer Epidemiology and Genetics (DCEG)
Sharon Savage, MD
Principle Investigator
DCEG – Clinical Genetics Branch Chief
NCI Shady Grove
Room 6E-454
9609 Medical Center Drive
Rockville, MD 20850
Voice: 240-276-7241
Email: savagesh@mail.nih.gov
Li-Fraumeni Syndrome Study
Dr. Payal Khincha, MBBS
LFS Study Clinical Fellow
NCI Shady Grove
Room 6E-540
Voice: 240-276-7267
Email: payal.khincha@nih.gov
Genetic Counselors:
Megan Frone, MS, CGC
9609 Medical Center Drive
Room 6E542
Rockville, MD 20850-9772
Voice: 240-276-5968
Fax: 240-276-7836
Email: megan.frone@nih.gov
Jessica Hatton, MS, CGC
9609 Medical Center Drive
Room 6E242
Rockville, MD 20850-9772
Voice: 240-276-7468
Fax: 240-276-7836
Email: Jessica.hatton@nih.gov
Nutrition:
Camella Rising, PhD, MS, RDN
Voice: 240-276-5262
Email: camella.rising@nih.gov
For additional information regarding NCI-designated cancer centers throughout the United States, please click here: Find a Cancer Center
1500 E. Duarte Rd
Duarte, CA 91010
Kathleen Blazer, Ed.D., M.S., L.C.G.C., is assistant clinical professor and associate director of the City of Hope Cancer Genetics Education Program and a bilingual board- certified genetic counselor specializing in cancer risk assessment. Her research activities are focused on patient behavioral outcomes and cancer genetics education and training initiatives. kblazer@coh.org telephone: (626) 218-8662
Bita Nehoray, M.S., L.C.G., is a board certified trilingual genetic counselor specializing in cancer risk assessment for hereditary cancer syndromes. Her current research interests include patient education and genetic cancer risk assessment in underserved Latinas. bnehoray@coh.org telephone (626) 218-8662
Ilana Solomon, ScM, M.A., L.C.G.C., is a board certified genetic counselor specializing in cancer risk assessment for hereditary cancer syndromes. Her specialty interests include hereditary gastrointestinal cancer syndromes, psychosocial genetic counseling and uncertainty in healthcare. isolomon@coh.org telephone (626) 218-8662
Christina Rybak, M.S., L.C.G.C., is a genetic counselor specializing cancer risk assessment for hereditary cancer syndromes. Current interests include gastrointestinal, renal and endocrine cases. crybak@coh.org telephone (626) 218-8662
875 Blake Wilbur Drive
Palo Alto, CA
Tel: 650-498-6000
Director, James M. Ford, MD
875 Blake Wilbur Dr.; Rm. 2320
Palo Alto, CA 94305-5822
Genetic Counselors:
Nicolette Chun, MS, LCGC
Phone: 650-498-5383
Kerry Kingham, MS, LCGC
Phone: 650-724-6702
kkingham@stanfordhealthcare.org
Alex Lebensohn, MS, LCGC
Phone: 650-721-2164
Courtney Rowe-Teeter, MS, LCGC
Phone: 650-736-7252
Breast Oncologist:
Allison Kurian, MD, MSc
Cancer Genetics GI Specialist:
Uri Ladabaum, MD, MS
Fax: 650-498-5150
Weekly Cancer Risk and testing clinic available to families with LFS concerns including annual screening protocol. We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI, adults only. Please contact one of the genetic counselors who can facilitate making appointments and answer questions. Children are followed at Stanford Children’s Hospital – the contact at that hospital for genetic counseling is Adrienne Miller Wakeling, MS
Pediatric Only
Cancer Predisposition Clinic
Children’s Hospital Colorado
(three locations)
13123 E. 16th Ave, B115
Aurora, CO 80045
1811 Plaza Drive
Highlands Ranch, CO 80129
4090 Briargate Parkway
Colorado Springs, CO 80920
Appointments: (720) 777-9808 (Telehealth available throughout Colorado)
Genetic Counselors
Kami Schneider, EdD, MS, CGC: (720) 777-2627 or kami.schneider@childrenscolorado.org
Ali Suttman, MS, CGC: (720) 777-2265 or alexandra.suttman@childrenscolorado.org
General: mbx-CCBDGCs@childrenscolorado.org
Pediatric Oncology
Michael Edwards, MD: (720) 777-1621 or michael.edwards@childrenscolorado.org
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
Adults only
University of Colorado (UCHealth)
Cancer Genetics Prevention Clinic – Ancshutz Medical Campus
1665 Aurora Court, Anschutz Cancer Pavilion, 2nd floor
Aurora, CO 80045
Appointments: (720) 848-6239
Referral fax: (720) 848-0360
Nurse Practitioners:
Jessica Berman, AGACNP-BC, MSN, RN
Mary Switala, FNP, MS
UCHealth – Lone Tree Medical Center
9548 Park Meadows Drive
Lone Tree, CO, 80124
Appointments: 720-848-2200 (opt 4, opt 1, opt3)
Referral fax: 720-553-0901
Breast Oncologist:
Anosheh Afghahi, MD
Long-term surveillance including breast MRI and wbMRI screening on adults with Li-Fraumeni syndrome.
UCHealth Hereditary Cancer Clinic – Anschutz Medical Campus
1665 Aurora Court, Anschutz Cancer Pavilion, 2nd floor
Aurora, CO 80045
Appointments: (720) 848-5944
Referral fax: (720) 848-0360
E-mail: hcc@ucdenver.edu
UCHealth Hereditary Cancer Clinic – Highlands Ranch
1500 Park Central Drive, Suite 101
Highlands Ranch, CO 80129
Appointments: (720) 516-1100
Referral fax: (720) 516-1101
Nemours Children’s Hospital of Delaware
1600 Rockland Road
Wilmington DE 19803
Contact:
Krista Krol-Buch
Cancer Genetics Program
Office Phone: 302-651-5506
Email: Krista.Krol-Buch@nemours.org
Laura Baker
Cancer Genetics Program
Office Phone: 302-651-5506
We currently follow pediatric patients with Li-Fraumeni syndrome for high risk surveillance (including wbMRIs) and treatment for those who have been diagnosed with cancer.
Moffitt Cancer Center offers whole body MRI (WB MRI) for adults and teenage individuals 14 years and above.
GeneHome Clinic
Hereditary Cancer Surveillance Clinic
Lee Moffitt Cancer Center
10920 N. McKinley Drive
Tampa, Florida 33612
Email: genetics@moffitt.org
Phone: 813-745-3555
Fax: 813-745-5445
Elizabeth Haynes, MD
Email: elizabeth.haynes@moffitt.org
Internal and Hospital Medicine
Meredith Keppel PA-C
email: meredith.keppel@moffitt.org
Leigh Dittman, BSN, RN
email: leigh.dittman@moffitt.org
Genetics Risk Assessment Clinic (GRAS)
10920 North McKinley Dr.
MKC-GEN
Tampa, FL 33612
Department Phone: (813) 745- 3555
Department Email: genetics@moffitt.org
Jennifer Brzosowicz, MS, LCGC- Lead Genetic Counseling Supervisor
Additional Genetic Counselors:
Carolyn Haskins, MS, LCGC
Darcy Berry, MS, LCGC
Kathleen Gewandter, MGC, LCGC
Laura V. Barton, MA, MS, LCGC
Melissa Manuelli, MS, LCGC
Stefania Alastre Arcusa, MSPH, LCGC
Revathy Suresh, MS, LCGC
Nicole Wright, MSPH, LCGC
We provide hereditary cancer risk assessment and genetic counseling for individuals diagnosed with Li-Fraumeni syndrome (LFS) for those suspected of having LFS. We facilitate and interpret genetic testing and our long-term surveillance for individuals with LFS is coordinated by Moffitt’s GeneHome Clinic.
3 Tampa General Circle
Tampa FL, 33606
Hereditary Cancer Surveillance Clinic
Cancer Prevention Clinic:
Regular follow-up of Li Fraumeni patients with or without a prior cancer diagnosis
Whole body MRI available for pediatrics within TGH and adult whole body MRI available locally with referral
Lisa Novak, PA-C
Email: Lnovak@TGH.org
Cancer Genetics Clinic:
Pre-test and post-test counseling
Brittany Sears, PhD, MSPH, LCGC
Genetic Services Program Manager
Email: bsears@tgh.org
Cecilia Gordillo Casero, MSGC, LCGC
Email: cgordillocasero@tgh.org
General contact information:
Email: cancergenetics@tgh.org
Phone: 813-660-6408
Thomas Rutherford, MD
Medical Director
We can provide genetic counseling and testing for adult and pediatric family members, screening for those with a LFS diagnosis, and comprehensive cancer treatment for affected individuals. Whole-body MRI is available for children onsite, and we can provide referrals for adult whole body MRI to a nearby partner clinic.
Website: https://www.tgh.org/institutes-and-services/cancer-institute/cancer-genetics-program
Pediatric Cancer Predisposition Clinic
Atlanta, GA 30322
Clinic: 404-727-1083
Email: cancerpredisposition@choa.org
Contact: Bojana Pencheva, MMSc , CGC
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
Comprehensive Cancer Risk and Prevention Clinic
Clinic: 773-702-8222 / 773-702-1093
The University of Chicago offers genetic counseling, cancer risk management and cancer treatment to both adults and children with LFS, with and without cancer diagnoses
Department of Pediatrics
Section of Hematology/Oncology & Stem Cell Transplantation
841 S. Maryland M/C 4060
Chicago, IL 60637
P: 773.702.2594/ F: 773.702.9881
Ami Desai, MD
Melody Perpich, MS,CGC, Licensed Genetic Counselor (pediatric)
Please phone: 773-702-2594 or email: mperpich@peds.bsd.uchicago.edu
Scheduling is: 773-702-9158
Feighanne Hathaway, Licensed Genetic Counselor (adults)
please phone: 773-702-4749
Adolescent and Young Adult (AYA) Oncology Program
Director Tara Henderson, MD, Childhood Cancer Survivors Center
Cancer Risk and Hematology Team
Licensed genetic counselor:
Feighanne Hathaway
Bassem I. Razzouk, MD, FAAP
Medical Director
Children’s Center of Cancer and Blood Diseases
Peyton Manning Children’s Hospital at Ascension St. Vincent
2001 W. 86th St., Entrance 4, 1st floor
Indianapolis, IN 46260
General Information: 317-338-5437
Phone: 317-338-4673 (HOPE)
Fax: 317-338-3227
email: BIRazzou@ascension.org
We follow the “LEAD ” Protocol for screening patients with LFS until age of 25, if they are cancer free and to age 26, if they are already established patients at our center. Through our St. Vincent’s foundation, we have been able to establish a “treatment / Diagnosis Access fund” that helps pay for tests that are not covered by insurance ( based on claims submitted and rejected).
Heartland’s Li-Fraumeni Syndrome Program
University of Kansas Cancer Center (adults)
Jeffrey Weitzel, MD,FACMG: jweitzel@kumc.edu
Genetic Counselor Katie Belshe: knelson@kumc.edu
Patients and providers can email heartlandslfs@KUMC.edu or call the Nurse Navigator at 913.588.3671.
Whole-body MRI is available at KUMC.
Children’s Mercy (pediatrics)
Kevin Ginn, MD: kginn@cmh.edu
Genetic Counselor Caitlin Schwager cschwager@cmh.edu
UK Health Care
Dr. John D’Orazio is Professor of Pediatrics and Chief of Pediatric Hematology/Oncology
800 Rose Street, C453 (DanceBlue Clinic)
Lexington, KY 40536
Office: 859-218-0931
Email: jdorazio@uky.edu
Dr. Amanda Harrington is Medical Director of the pediatric and young adult cancer predisposition program within the hematology and oncology division.
Email: Amanda.Harrington@uky.edu
UK HealthCare offers whole body MRIs and cancer genetic counseling
450 Brookline Avenue
Boston, MA 02215
Li-Fraumeni Syndrome Whole Body MRI Study
Judy E. Garber, MD, MPH
Professor of Medicine, Harvard Medical School
Director, Center for Cancer Genetics and Prevention
Office phone: 617-632-5770
Appointment phone: 617-632-2178
Email: judy_garber@dfci.harvard.edu
Lisa R. Diller, MD
Professor of Pediatrics, Harvard Medical School
Clinical Director, Pediatric Oncology, Medical Director, Perini Clinic
Pediatric/Jimmy Fund Clinic, Dana-Farber Cancer Institute
Office phone: 617-632-5642
Appointment phone: 888-733-4662
Email: lisa_diller@dfci.harvard.edu
Serena Masciari, MD, MSc
Research Scientist
Office phone: 617-632-6821
Email: serena_masciari@dfci.harvard.edu
Genetic Counselors:
Katherine Schneider, MPH, LGC
Adult and Pediatric Genetic Counselor
Office phone: 617-632-3480
Appointment phone: 617-632-3314
Email: Katherine_Schneider@dfci.harvard.edu
Carly Grant, MS, LGC
Adult and Pediatric Genetic Counselor
Office phone: 617-582-8283
Appointment phone: 617-632-2178
Email: Carly_Grant@dfci.harvard.edu
Anu Chittenden, MS, LGC
Lead Genetic Counselor
Office phone: 617-632-4757
Appointment phone: 617-632-2178
Email: Anu_Chittenden@dfci.harvard.edu
Irene Rainville, PhD, LGC
Genetic Counselor
Office phone: 617-582-8537
Appointment phone: 617-632-2178
Email: Irene_Rainville@dfci.harvard.edu
Alison Schwartz, MS, LGC
Genetic Counselor
Office Phone: 617-582-8094
Appointment Phone: 617-632-2178
Email: Alison_schwartz@dfci.harvard.edu
55 Fruit St. – YAW 9A
Boston, MA 02114
Phone: 617-724-1971
Fax: 617-726-9418
Massachusetts General Hospital Cancer Center
Physicians:
Leif Ellisen, MD, PhD
Director, Breast and Ovarian Cancer Genetics and Risk Assessment Program
Genetic Counselors:
Kristen Mahoney Shannon, MS, CGC
Program Manager / Senior Genetic Counselor
Center for Cancer Risk Assessment
Email: keshannon@partners.org
Pediatric Cancer Predisposition Clinic
Christy H. Smith, ScM, CGC
Senior Genetic Counselor
600 N Wolfe St. Blalock 2008
Baltimore MD 21287
Phone: 410-955-3071
Fax: 410-367-3231
Email: chsmith@jhmi.edu
Christine Pratilas, MD
Pediatric Medical Oncologist
Associate Professor of Oncology, Pediatrics & Cellular and Molecular Medicine
Sidney Kimmel Comprehensive Cancer Center
Johns Hopkins University School of Medicine
1800 Orleans St.
The Charlotte R. Bloomberg Children’s Center Building, 11th Floor
Baltimore, MD 21287
In partnership between the Johns Hopkins Department of Genetic Medicine and the Pediatric Oncology Service, we provide hereditary cancer risk assessment, genetic testing, and genetic counseling for individuals diagnosed with or suspected of having LFS. We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI, children only. Please contact our office at 410-955-3071 who can facilitate making appointments and answer questions.
Adults are seen separately for genetic counseling and testing at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. To schedule an appointment, please call 410-955-8964.
Pediatric Cancer Genetic Clinic
3901 Beaubien Boulevard
Detroit, MI 48201
Clinic phone number: 313-832-9330
Contact: Erin Carmany, MS, CGC; Leigh Anne Flore, MD, FACMG
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
U-M Rogel Cancer Center
1500 East Medical Center Drive
CCGC 6-303
Ann Arbor, MI 48109-0944
Clinic phone number 734-615-5404
Contact: CancerGenetics@med.umich.edu
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children and adults.
300 North Ingalls, SPC 5419
Ann Arbor, MI 48109
Phone: 734-615-5404
Fax: 734-763-7672
Appointments: 734-763-2532
Physicians:
Elena Stoffel, MD, Director
Tobias Else, MD
Shane Quinonez, MD
Goutham Narla, MD, PhD
Genetic Counselors:
Michelle Jacobs, MS, CGC
Monica Marvin, MS, CGC
Andrea Murad, MS, CGC
Jenae Osborne, MS, CGC
Dianne Samad, MS, CGC
Sarah Austin, MS
Services Available: genetic risk assessment, whole body MRI and individualized surveillance plans offered
Cancer Predisposition Clinic
Children’s Minnesota – Minneapolis
Clinic Location
Children’s Minnesota Specialty Center
2530 Chicago Avenue
Minneapolis, MN 55404
P: 612-813-5940
F: 612-813-6325
Pediatric Oncologists
Melanie Ann Chihak, DO
Katie Lynn Greenwood, MD
Jawhar Rawwas, MD
Kris Ann Schultz, MD
Chelsea Marie Self, MD
Genetic Counseling
Dinel Allison Pond, CGC, MS
P: 612-813-7077
We provide genetic counseling and coordination of genetic testing for individuals at risk for LFS. Once diagnosed, we follow children and adolescents with recommended surveillance including whole-body MRI screening. We also treat LFS individuals who have been diagnosed with cancer, giving particular attention to treatment planning that takes into account their underlying LFS diagnosis. When ready to transition into the adult setting, we partner with adult hereditary cancer programs to facilitate ongoing care.
Cancer Risk Management Program Website
Cancer Risk Management Program PDF
Dr. Rob Madoff, Medical Director
Denise Musser, APRN-CNS, OCN, ANG-BC: dmusser10@umphysicians.umn.edu
Mary Ahrens, CGC
Alyssa Kne, CGC
Sarah Mets, CGC
Olivia Michel, CGC
Genetic risk assessment, whole body MRI and individualized surveillance plans offered for children and adults.
420 Delaware St. SE, Mayo Mail Code 450
Minneapolis, MN 55455
Information: 612-626-9898
FAX: 612-625-4406
Scheduling: 855-486-7226 (4UMPCANCER)
Adult: Washington University/Siteman Cancer Center
Pediatric: Washington University/St. Louis Children’s Hospital
Pediatric Cancer Predisposition Program
Clinic: 314-454-6018
Jennifer Henry, clinic coordinator
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children and adults.
Specializing in Cancer Genomics, including DNA/RNA Sequencing and Transcription Analysis
660 South Euclid Avenue
Campus Box 8116
St. Louis, MO 63108
Department of Pediatrics, Division of Genetics and Genomic Medicine
Physicians:
Dr. Todd Druly, MD, PhD
Assistant Professor of Pediatrics and Genetics
Appointment Phone: 314-454-6018
Fax: 314-454-2780
Office: 314-286-2124
Email: druley_t@wustl.edu
Robert Hayashi, MD
Professor of Pediatrics
Director, Division of Hematology & Oncology
Phone: 314-454-6018
Fax: 314-454-2780
Office: 314-
Email: hayashi_r@wustl.edu
Beth Kozel, MD, PhD
Assistant Professor of Pediatrics
Division of Genetics & Genomic Medicine
Appointment Phone: 314-454-6093
Fax: 314-454-2075
Office: 314-454-6093
Email: kozel_b@kids.wustl.edu
Marwan Shinawi, MD
Assistant Professor of Pediatrics
Division of Genetics & Genomic Medicine
Appointment Phone: 314-454-6093
Fax: 314-454-2075
Office: 314-747-1837
Email: shinawi_m@kids.wustl.edu
Nurse Practitioner:
Katie Gettinger, RN, CPNP
Phone: 314-454-6018
Fax: 314-454-2780
Email: gettinger_k@kids.wustl.edu
Genetic Counselors:
Nicole Armstrong, MS, CGC
Phone: 314-454-6093
Fax: 314-454-2075
Linda Manwaring, MS, CGC
Phone: 314-454-6093
Fax: 314-454-2075
Kayla Smith, MS, CGC
Phone: 314-454-6093
Fax: 314-454-2075
Marisa Vineyard, MS, CGC
Phone: 314-454-6093
Fax: 314-454-2075
Clinic Coordinator:
Jennifer Henry
Phone: 314-454-6048
Fax: 314-454-2780
Email: henry_je@kids.wustl.edu
Duke University Medical Center & Duke Cancer Institute:
Duke offers hereditary cancer risk assessment and counseling, cancer risk management and cancer treatment to both children and adults with Li-Fraumeni syndrome (LFS), with and without cancer diagnoses. We offer state-of-the-art surveillance with modalities including whole body MRI and dedicated breast MRI.
Physicians:
Dr. David Van Mater, Pediatric Oncologist
Contact: 919-684-3401
Dr. Laura H. Rosenberger, Breast Surgical Oncologist
Contact: 919-470-8649
Cancer Genetics Program:
Dr. Andrew Berchuk and Dr. Jennifer Plichta, Co-Directors
Lead Genetic Counselor: Maggie Frazier, CGC
Contact: 919-684-3181
Levine Cancer Institute/Atrium Health
LCI-Genetics
1021 Morehead Medical Drive Ste 2300
Charlotte, NC 28204
Ashley Sumrall, MD
Sara Elrefai, MD – Geneticist
Adult clinic contacts:
Mitch Ingram, Registered Nurse
Email: Mitcherlean.Ingram@atriumhealth.org
Telephone: 980-442-2507
Kelly Warsinske, Certified Genetic Counselor
Email: kelly.warsinske@atriumhealth.org
Telephone: 980-442-2546.
Pediatric cancer clinic:
Megan Pollard, Certified Genetic Counselor
Email: megan.pollard@atriumhealth.org
telephone: 980-442-2547
We can provide wbMRI for children and adults. For adults, there is also a multi-disciplinary LFS clinic with medical oncology.
Pediatric Oncology Predisposition
Memorial Sloan Kettering Cancer Center
1275 York Avenue, Box 295
New York, NY 10065
Michael F. Walsh, MD
Geneticist & Pediatric Oncologist
Jennifer Kennedy, MS
Certified Genetic Counselor
Phone: 646-888-4102
Fax: 646-888-4051
Efax: 646-227-7244
Email: kennedj1@mskcc.org
Michael Walsh is a pediatrician, geneticist, and hematologist-oncologist. He treats children with cancer and takes care of families with a predisposition to cancer, such as Li-Fraumeni syndrome. As a member of the Niehaus Center for Inherited Cancer Genomics, the Department of Pediatrics and the Clinical Genetics team, he prescribes treatments, offers risk-reductive options, generates surveillance plans, and contextualizes information for patients.
Hereditary Cancer Screening and Risk Reduction Program
Wilmot Cancer Institute – University of Rochester Medical Center
125 Red Creek Rd.
Rochester NY 14623
Phone: 585-486-0600
Genetics Providers:
Danielle Marino MD, AGAF, Certified GCRA Specialist
Maria McGreevy MD, Certified GCRA Specialist
Eran Tallis MD
Nicholas Bartell MD, Certified GCRA Specialist
Carol Shaw NP, ACGN, Certified GCRA Specialist
Ashley Hendershot DNP, FNP, ACGN
Megan Underhill NP, PhD
Patricia Mallaber DNP, ANP
Mysti Geiger MS, CGC
Daniel Brennsteiner, MS
Allison Zeznick PA, Certified GCRA Specialist
Whole-body MRI is available for both pediatrics and adults.
Hereditary Cancer Program & Pediatric Hereditary Cancer Predisposition Program
3333 Burnet Avenue, ML 4006
Cincinnati, OH 45229
Phone: 513-636-4760
Fax: 513-636-7297
Email: hereditarycancerprogram@cchmc.org
Genetic Counselors:
Sara Knapke, MS, CGC
Erin Mundt, MS, CGC
Diana Smith, MS, CGC
Clinical Geneticists:
T. Andrew Burrow, MD
Robert Hopkin, MD
Nancy Leslie, MD
Derek Neilson, MD
Howard Saal, MD
Elizabeth Schorry, MD
Cleveland Clinic: Cancer Genetics
Call 216-636-1768
Below are the list of providers taking care of patients with LFS
Physicians:
Harry Layton Lesmana, MD
Clinical Geneticist and Pediatric Hematologist/Oncologist
Children and Adults
Timothy Tramontana, MD
Clinical Geneticist
Adults only
Genetic counselors:
Ohio
Lauren Bokovitz, MS, CGC
Kamille Clever, MS, CGC
Maribeth Golm, MS, CGC
Jessica Marquard, MS, CGC
Sarah McGee, MS, CGC
Daniel Mitchell, MS, CGC
Ryan Noss, MS, CGC
Brittany Stewart, MS, CGC
Florida (Ohio-based but licensed by the state of FL for virtual assistance in genetic testing and counseling)
Sara Rhode, MS, CGC
Vanessa Marcell, MS, CGC
At Cleveland Clinic, we have an established cancer genetics program where we help identifying individuals with hereditary cancer predisposition syndromes through genetic risk assessment, genetic testing and counseling. We also provide a personalized cancer screening surveillance. Specific to LFS, we are following the Modified Toronto Protocol and we have the ability to do whole body MRI for both adults and children with LFS.
Cancer Genetics Clinic
Main Campus:
700 Childrens Drive
Columbus, OH 43205
Clinic phone number: 614-722-3250
Contact: Kristin Zajo Kristin.Zajo@nationwidechildrens.org
(614) 722-1801 (phone)
(614) 690-6890 (pager)
(614) 722-8927 (fax)
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
3401 Civic Center Boulevard
Philadephia, PA 19104
Phone: 215-590-9399
Cancer Predisposition Program: Li-Fraumeni syndrome
Physicians:
Garrett Brodeur, M.D.
Suzanne MacFarland, M.D.
Kristin Zelley, M.S.: zelleyk@email.chop.edu
Certified Genetic Counselor, Cancer Predisposition Program
Phone: 267-426-5877
Fax: 215-590-3770
Sarah Jennings, M.S.: jenningsse@email.chop.edu
Certified Genetic Counselor, Cancer Predisposition Program
Phone: 267-426-3850
Fax: 215-590-3770
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only, but we are able to refer adult patients to the Hospital of the University of Pennsylvania.
Penn State Health Children’s Hospital
500 University Drive
Hershey PA, 17033
Website: https://www.pennstatehealth.org/childrens/services-treatments/hematology-oncology
Pediatric Cancer Predisposition Clinic
Please contact genetic counselor Krista Krol-Buch for appointments
Oncologist
Daniel J. McKeone, MD
Assistant Professor
Department of Pediatrics, Division of Pediatric Hematology/Oncology
Office Phone: 717-531-6012
Appointment phone: 717-531-6807
Pediatric Cancer Genetic Counselors
Office Phone: 717-531-0003 X286683
Appointment Phone: 717-531-6403
We follow unaffected individuals with LFS with high-risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI. We currently only follow and treat pediatric patients. Our clinic occurs on the third Wednesday of every month.
Cancer Risk Evaluation Program (CREP)
CREP Scheduler: 215-349-9093
Email: CREPteam@uphs.upenn.edu
Providers:
Kara Maxwell, MD PhD
Jacquelyn Powers, MS LCGC
Jessica Long, MS LCGC
Jessica Ebrahimzadeh, MS LCGC
Dana Clark, MS LCGC
Danielle McKenna, MS LCGC
We follow adults with LFS for their cancer screening. We work closely with our colleagues at the Children’s Hospital of Philadelphia to provide care for the whole family.
Phuong L. Mai, MD, MS
Magee Womens Hospital, UPMC Cancer Genetics Program
5115 Centre Ave
Pittsburgh, PA 15232
412 641 7449
maip@upmc.edu
Julia Meade, MD
Children’s Hospital of Pittsburgh of UPMC
Division of Hematology/Oncology
Pediatric Cancer Predisposition Program
4401 Penn Avenue
Pittsburgh, PA 15224
412-692-8864
julia.meade@chp.edu
We follow unaffected individuals with LFS for surveillance, including whole-body MRI. Adults are seen in the UPMC Cancer Genetics Program and children are seen in the Pediatric Cancer Predisposition Program. Genetic counseling and testing services are also available
Cancer Predisposition Program
262 Danny Thomas Boulevard
Memphis, TN 38105
Clinic phone number 901-595-4445
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
Kim Nichols, MD
Division of Cancer Predisposition
262 Danny Thomas Place
Memphis, TN 38105
(901) 595-8385 – office
Kim.nichols@stjude.org
Rose B. McGee, MS, CGC
Office Phone: 901-595-7548
Email: rose.mcgee@stjude.org
Patient Referral Office:
Website: https://www.stjude.org/patient-referrals.html
Email: referralinfo@stjude.org
Voice: 1-888-226-4343 or 901-595-4055
Daniel Benedetti, MD, MA
Associate Professor
Department of Pediatrics, Division of Hematology/Oncology
Phone: (615) 936-1762
Email: Daniel.Benedetti@vumc.org
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening WBMRI – children and young adults. We are associated with Vanderbilt Ingram Cancer Center and refer adults to the Hereditary Cancer Clinic.
Cancer Genetics and Genomics Program
Mailing Address:
Texas Children’s Hospital
1102 Bates Street, FC 1200
Houston, TX 77030
Clinic Location:
Texas Children’s Hospital
Clinical Care Center, 14th Floor
6701 Fannin Street
Houston, TX 77030
Physicians:
Carlos Bancino, MD
Chief, Cancer Genetics Clinic
Director, Pediatric Genetics Clinic
Medical Director, Cytogenetics Laboratory, BCM Medical Genetics Laboratories
6701 Fannin St.
16th Floor
Houston, TX 77030
Phone: 832-822-4292
Referrals: 832-824-4685
Email: splon@bcm.edu
Surya P. Rednam, MD
Director, Childhood Cancer Prevention and Screening Clinic
Physician, Pediatric Brain Tumor Team
Instructor, Pediatrics, BCM
Phone: 832-822-1523
Referrals: 832-822-4242 (or 1-800-CANCER9/1-800-226-2379)
Email: sprednam@txch.org
Genetic Counselor:
Sarah Scollon, MS, CGC
Phone: 832-824-4685
Email: sxscollo@texaschildrens.org
Li-Fraumeni Program
Clinical Cancer Genetics Program
1515 Holcombe Blvd., Unit 1354
Houston, Texas 77030
Ph: 713-745-7391
Fax: 713-563-0909
ccg@mdanderson.org
LFS Screening Program
Li-Fraumeni syndrome (LFS) is a hereditary cancer syndrome that causes a predisposition to a wide range of certain, including rare, cancers. Due to the wide range of cancer risk and high-risk screening and prevention options, MD Anderson’s Clinical Cancer Genetics Program created a multi-disciplinary program to offer comprehensive care to individuals with LFS. Our goal is to provide comprehensive cancer genetic counseling, risk assessment, education, screening and early detection to individuals with a known diagnosis of LFS. Our program includes a team of practitioners from a wide range of specialties, including genetics, breast, surgery, hematological oncology, gastroenterology, gynecological oncology, neuro-oncology, endocrinology, pathology, radiology and behavioral science, all with the expertise and knowledge to care for individuals with LFS. The Program provides services for both adults and children with LFS.
To set up an appointment, please contact us and specify that that you would like to be scheduled in the Li-Fraumeni Screening clinic. In general, LFS screening begins once a patient is ~6 months out from their active cancer diagnosis. We also follow unaffected individuals with LFS with high-risk surveillance (including whole-body MRIs).
Cancer Genetic Testing and Counseling:
For Females: 713-792-4124
For Males: 713-563-2000
For Pediatrics: 713-792-5410
The Family Cancer Assessment Clinic (FCAC) at Huntsman Cancer Institute is a team of doctors and genetic counselors. They help patients find out if genes play a role in their personal or family health history.
2000 Circle of Hope
Salt Lake City, UT 84112
Phone: 801-587-9555
Fax: 801-585-5763
Associated physicians:
Joshua Schiffman, M.D. – pediatric oncology (Read about Dr. Schiffman’s research in “Schiffman Lab“)
Luke Maese, DO – pediatric hematology oncology
Sarah Colonna, MD – oncology
Casey Mehrhoff, MD – oncology
Genetic counselors:
Wendy Kohlmann, MS CGC: wendy.kohlmann@hci.utah.edu
Jennie Vagher, MS, CGC: jennie.vagher@hci.utah.edu
University of Virginia
1215 Lee Street
Charlottesville, VA 22903
Contact: Martha Thomas, MS, CGC
Phone: (434) 243-6071
Email: MarthaThomas@virginia.edu
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI. Clinic typically occurs the first Thursday of the month and we can help coordinate clinic and screening appointments for patients who travel a distance to see us.
Children’s Hospital of the King’s Daughters (CHKD)
601 Children’s Lane
Norfolk, Virginia 23507
Dr. Wilson File
Telephone: 757-668-7243
Lindsey Sawyer, Certified Genetic Counselor
Telephone: 757-668-9760
Email: lindsey.sawyer@chkd.org
We can provide wbMRI for children.
Seattle Children’s Hospital
Cancer Predisposition Clinic
4800 Sand Point Way NE
Seattle, WA 98105
Phone: 206-987-2106
Fax: 206-985-3357
CancerPredispositionClinic@seattlechildrens.org
Physician: Michelle Ting, MD
Genetic Counselor: Natalie Waligorski, MS, MPH, CGC
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children only, but we are able to refer adult patients to the Seattle Cancer Care Alliance.
Children’s Wisconsin
Cancer Predisposition Clinic
8915 W. Connell Ct.
Milwaukee, WI 53226
Phone: 414-266-3638
Associated with the Medical College of Wisconsin
Oncologist:
Kerri Becktell, MD, MS
Genetic Counselors:
Amy Ott, MS, CGC
Sarah Linn, MS, CGC
We are able to provide genetic counseling and coordination of genetic testing for individuals at risk for LFS. Once diagnosed, we follow unaffected children and adolescents with LFS with recommended surveillance including wbMRI screening. We also treat LFS individuals who have been diagnosed with cancer with particular attention to treatment planning that takes into account their underlying LFS diagnosis. We have a partnership with an adult hereditary cancer program to allow for smooth transition of care when patients reach adulthood.
Adult & Pediatric Cancer Risk and Prevention Program
600 Highland Ave (adults) & 1675 Highland Ave (pediatrics)
Madison, WI 53792
Phone: 608-263-7284
Hematologist/Oncologists:
Jane Churpek, MD, MS (adult hematologist/oncologist & cancer geneticist)
Margo Hoover-Regan, MD (pediatric hematologist/oncologist)
Genetic Counselors:
Anna Zakas, MS, MPH, CGC (adult)
Kelcy Smith-Simmer, MMSc, CGC (adult & pediatric)
We provide coordinated, comprehensive early detection and prevention care for pediatric and adult patients with LFS, including whole body MRI (sedation is available for pediatrics and adults who need it). We also provide coordinated hematology/oncology care for patients with LFS with one or more cancer diagnoses, ensuring LFS-appropriate strategies are utilized. We offer opportunities for patients and family members to participate in research studies to further understand LFS and improve diagnosis and management for the future.
111 Michigan Ave, NW
Washington, DC 20010
Joyce T. Turner, MS, CGC
Director, Cancer Genetic Counseling Program
Clinical Instructor, George Washington University
Genetics: 202-476-4685 (Fax) 202-476-2390
Pathology: 202-476-6553 (Fax) 202-476-4030
jturner@childrensnational.org
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – children, only.
2300 M Street, 8th Floor
Washington, DC 20037
We follow individuals with LFS but do not offer wbMRI. We work closely with Children’s National Medical Center to provide care for LFS children and adults.
Hereditary Cancer Prevention and Management Center
Clinic phone number: 414 649-563. Contact Brenda Ramczyk.
Email contact: genetic.counseling@aurora.org
We follow unaffected individuals with LFS with high risk surveillance, treat LFS individuals who have been diagnosed with cancer, and can perform screening wbMRI – adults, only.
The Kinghorn Cancer Centre and Cancer Division
370 Victoria St, Darlinghurst NSW 2010
Professor David Thomas, FRACP, PhD
Director, Kinghorn Cancer Centre
Head, Cancer Division
Phone: +612 9355 5770
Email: d.thomas@garvan.org.au
Dr Mandy Ballinger, BSc (Hons), MGenCouns, PhD
Group Leader, Genetic Cancer Risk
Phone: +612 9355 5806
Email: m.ballinger@garvan.org.au
St. 305 Grattan Street
Melbourne
Victoria 3000
Australia
Paul James
Director, Familial Cancer Centre
Phone: +613 8559 5332
Fax: +613 8559 5329
Familial Cancer Centre
level 1, 305 Grattan Street
Melbourne
Victoria
Ph: +613 8559 5322
Email: FamilialCancer@petermac.org
Rua Dona Adma Jafet, 115 4th floor, Bloc Be, room 58
Sao Paulo, Brasil
Telephone: + 55 11 3394-5428 & 11 33394-5521
Maria Isabel Waddington Achatz, MD, PhD
Coordenadora do Departamento de Oncogenética
See also: Hospital Sírio-Libanês Unidade Brasília- Asa Sul e Lago Sul
Renata Lazari Sandoval – Clinical Geneticist
Hospital Sirio Libanes · Department of Oncology
Dr. Maria Isabel Achatz
Head, Cancer Genetics Unit at Hospital Sírio-Libanês
LFSA – Latin America co-chair and LFSA Scientific Advisory Board member
Agende sua consulta presencial ou por telemedicina: (11)95816-5718
LinkedIn: Dr. Maria Isabel Achatz
Website: mariaisabelachatz.org
Cancer Genetics Program
Toronto, Ontario. Canada
Physicians:
David Malkin, MD – Director
Staff Oncologist, Division of Hematology/Oncology
Senior Scientist, Genetics & Genome Biology Program
Phone: 416-813-7753
Lab phone: 416-813-8206
Fax: 416-813-5327
email: david.malkin@sickkids.ca
Clinical Research Coordinator:
Ana Novokmet
Phone: 416-813-8204
Email: ana.novokmet@sickkids.ca
Staff Oncologist, Division of Haematology/Oncology
Anita Villani: anita.villani@sickkids.ca
Genetic Counselors:
Bailey Gallinger: bailey.gallinger@sickkids.ca
416-813-8597.
For scheduling: 416-813-6390
Princess Margaret Cancer Centre
Familial Cancer Clinic
610 University Avenue 700U-6W390
Toronto, Ontario M5G 1Z5
Tel: 416-946-2270
Fax: 416-946-6528
Email: cancergenetics@uhn.ca
Dr. Raymond Kim raymond.kim@uhn.ca
The Familial Cancer Clinic serves adults with LFS, often who have graduated from the Hospital for Sick Children. They utilize the entire Toronto Protocol, with adjustments for adults (e.g. annual abdominal US, no ACC hormone profiling).
Service de Génétique
Unité de Génétique Clinique
CHU ROUEN Normandie
Hôpital Charles Nicolle
37, boulevard Gambetta, 76000
Rouen, France
+33.2.32.88.87.47
email: genetique-clinique.secretariat@chu-rouen.fr
Wilhelmstrasse 31
D-53111 Bonn
Deutschland
Oberarzt Dr. med. Stefan Aretz
Institut für Humangenetik
Phone: + 49 228-287 22391
Fax: + 49 228-287 22380
Stefan.Aretz@uni-bonn.de
Carl-Neuberg Straße 1
30625 Hannover
Deutschland
MHH Department of Human Genetics
+49 511 532-6533
Email: humangenetik@mh-hannover.de
Prof. Dr. med. Christian Kratz
Direktor
Zentrum für Kinderheilkunde und Jugendmedizin
Klinik für Pädiatrische Hämatologie und Onkologie
Leitung (gemeinsam mit Prof. Pfister, Heidelberg):
Li-Fraumeni / Krebsprädispositionssyndrom Register
Sprechstunde für Kinder/Familien mit Li-Fraumeni Syndrom
Phone: +49 511 532-6711
Fax: +49 511 532-9120
kratz.christian@mh-hannover.de
https://www.mh-hannover.de/kinderonkologie.html
Dr. med. Beate Dörgeloh
Zentrum für Kinderheilkunde und Jugendmedizin
Klinik für Pädiatrische Hämatologie und Onkologie
Phone: +49 511 532-6711
Fax: +49 511 532-9120
Doergeloh.Beate@mh-hannover.de
Prof. Dr. med. Brigitte Schlegelberger
Direktorin
Institut für Humangenetik
Tel.: +49 511 532-4522
Fax: +49 511 532-161064
Schlegelberger.Brigitte@mh-hannover.de
https://www.mh-hannover.de/humangenetik.html
Privatdozent Dr. med. Thomas Wirth
Klinik für Gastroenterologie, Hepatologie und Endokrinologie
Phone: +49 511 532-6761
Fax: +49 511 532-4896
Wirth.Thomas@mh-hannover.de
Im Neuenheimer Feld 580
69120 Heidelberg
Deutschland
Prof. Dr. Stefan M. Pfister
Direktor Präklinisches Programm
Hopp-Kindertumorzentrum am NCT Heidelberg
Pädiatrische Neuroonkologie, Deutsches Krebsforschungszentrum;
Klinik für Kinderheilkunde III, Onkologie, Hämatologie, Immunologie und
Pneumologie
Leitung (gemeinsam mit Prof. Kratz, Hannover):
Li-Fraumeni / Krebsprädispositionssyndrom Register
Phone: +49 6221-42 4617
Fax: +49 6221-42 4639
s.pfister@dkfz.de
http://www.dkfz.de/de/paediatrische-neuroonkologie/
Dr. med. Kristian W. Pajtler, MBA
Hopp-Kindertumorzentrum am NCT Heidelberg
Klinik für Kinderheilkunde III, Onkologie, Hämatologie, Immunologie und
Pneumologie
Pädiatrische Neuroonkologie, Deutsches Krebsforschungszentrum;
Phone: +49 6221-42 4585
Fax: +49 6221-42 4639
k.pajtler@dkfz-heidelberg.de
Privatdozentin Dr. Sarah Schott
Allgemeine Frauenheilkunde und Geburtshilfe
Sektionsleiterin Translationale Frauenheilkunde
Leiterin familiäre Krebserkrankungen
Im Neuenheimer Feld 440
69120 Heidelberg
Phone: +49 6221-56 7901
Fax: +49 6221-56 33713
sarah.schott@med.uni-heidelberg.de
Prof. Dr. Claus R. Bartram
Geschäftsführender Direktor
Institut für Humangenetik
Phone: 06221 56-5151
Fax: 06221 56-5155
cr_bartram@med.uni-heidelberg.de
Prof. Dr. Ute Moog
Leiterin, Genetische Poliklinik
Institut für Humangenetik
Phone: +49 6221 56-5082
Fax: +49 6221 565080
ute.moog@med.uni-heidelberg.de
Calwerstraße 7
72076 Tübingen
Deutschland
Prof. Dr. med. Olaf Rieß
Ärztlicher Direktor
Institut für Medizinische Genetik und Angewandte Genomik
Phone: +49 7071-29-76458
Fax: +49 7071-29-75171
olaf.riess@med.uni-tuebingen.de
Privatdozentin Dr. med. Ines Brecht
Abteilung für Hämatologie/Onkologie
Universitätsklinik für Kinder- und Jugendmedizin
Hoppe-Seyler- Str. 1
72076 Tübingen
Phone: +49 7071 29-62297
Fax: +49 7071 29-5481
Ines.brecht@med.uni-tuebingen.de
Albert-Einstein-Allee 11
89081 Ulm
Deutschland
Prof. Dr. med. Reiner Siebert
Institut für Humangenetik
Instituts direktor
Phone. +49 731 500-65400
Fax. +49 731 500-65402
reiner.siebert@uni-ulm.de
Sheba, Tel Hashomer Medical Center in Israel
Preventive Oncology Clinic
Tel Hashomer, 52621
Israel
The Preventive Oncology Clinic in Sheba is a multidisciplinary clinic specializing in the diagnosis and follow-up of children and adults diagnosed with Li-Fraumeni syndrome . This is the only clinic in Israel which enables the recommended follow up in order to achieve early diagnosis of cancer in these families.
Preventive Oncology Clinic facilities include:
- Pediatric Oncologists
- Adult Oncologist
- Genetic counseling- initial genetic counseling, providing genetic answers and recommendations to close family members .
- Administrative escort – clinic coordinator – coordinating tests and ongoing follow up for several days a year and for all members of the family together.
- Multidisciplinary consultants for children and adults by senior physicians such as gynecologist, gastroenterologist, breast oncologist, endocrinologist, neurologist, dermatologist and more.
- The clinic also provides counseling regarding Fertility and Preimplantation genetic diagnosis (PGD)
- Advising on important decisions that arise during follow-up
Eitan Friedman, MD, PhD
Founder and director, Oncogenetics Unit, Institute of Human genetics
Sheba Medical Center
Office phone: +972-3-5303173
Email: Eitan.Friedman@sheba.health.gov.il
Michal Yalon , MD
Director – Neuro-Pediatric Oncology Department
Office phone: +972-3-5302996
Email: Michal.Yalon@sheba.health.gov.il
Naama Halpern , MD
Adult Oncologist
Office phone: +972-3-5305338
Email: Naama.Halpern@sheba.health.gov.il
Iris Kventsel , MD
Pediatric Oncologist
Office phone: +972-3-5302996
Email: Iris.Kventsel@sheba.health.gov.il
Lior Katz, MD, MHA
High Risk and GI Cancer prevention Clinic
Gastro-Oncology Unit
The Department of Gastroenterology
Sheba Medical Center
Office phone: +972-3-5302660
Email: Lior.Katz@sheba.health.gov.il
Zehavit Frenkel, PhD
Preventive Oncology Clinic Coordinator
Pediatric Hemato-Oncology Department
Office phone: +972-3-5302996/7142
Fax: +972-3-5307263
Email: Zehavit.Frenkel@sheba.health.gov.il
Department of Pediatric Hematology and Oncology
Clinic phone number +39 0668594664
Prof. Franco Locatelli
Full Professor of Pediatrics
University of Pavia
Director, Department of Pediatric Hematology and Oncology
IRCCS Ospedale Pediatrico Bambino Gesù
Piazza Sant’Onofrio, 4
00165 Rome, Italy
Phone: +39 06 68592678/2129
Fax: +39 06 68592292
e-mail: franco.locatelli@opbg.net
Angela Mastronuzzi, MD, PhD
Neuro-Oncologist
Department of Pediatric Hematology and Oncology
IRCCS Ospedale Pediatrico Bambino Gesù
Piazza Sant’Onofrio, 4
00165 Rome, Italy
Phone: +39 0668594664
Fax: +39 0668592292
Mobile: +39 3371329089
e-mail: angela.mastronuzzi@opbg.net
Dr.ssa Valentina Arcangeli
Specialista in Oncologia Medica and Genetica Medica
Ambulatorio di Genetica Medica Oncologica, sede di Rimini
Istituto Romagnolo per lo Studio dei Tumori “Dino Amadori” IRCCS, Meldolla (FC)
tel segreteria 0541/705443 (da lunedi a venerdi dalle 9:00 alle 12:30)
(from Monday to Friday from 9:00 to 12:30)
email: valentina.arcangeli@irst.emr.it
Istituto Romagnolo per lo Studio dei Tumori “Dino Amadori” IRCCS, Meldolla (FC)
Via Piero Maroncelli, 40 – 47014 Meldola (FC), Italy
tel. +39 0543 739100 – fax +39 0543 739123
http://www.irst.emr.it
Clinica per il Cancro Familiare
Dott.ssa Isabella Mammi – Consulente genetista
Via Gattamelata, 64, 35128 Padova PD, Italy
Modalità di prenotazione visite SSD Tumori ereditari e endocrinologia oncologica
O e-mail help.cfc@iov.veneto.it
In Lissabon:
Helena Canhao, MD, PhD
Secretary of State for Research and Science
NOVA Medical School
Universidade Nova de Lisboa
Campo Mártires da Pátria, 130
Lisboa
helena.canhao@nms.unl.pt
T: (+351) 21 880 3030 ext 20426
E: diretora@nms.unl.pt
Campo Mártires da Pátria, 130
1169-056 Lisboa – Portugal
In Porto:
Carla Oliveira (carlaol@ipatimup.pt) is the national coordinator of ERN GENTURIS and can refer patients to the appropriate certified expert centers.
Email: to consulta.oncogenetica@chsj.min-saude.pt in order to get further information on how to be scheduled for a consultation.
Please cc Carla Oliveiria: carlaol@i3s.up.pt
Centro Hospitalar São João
EVITA Association – Hereditary Cancers, supports families with hereditary cancer syndromes. Contact Tamara Hussong Milagre, President of EVITA, here: info@evitacancro.org or call +351 962 003 510.
The Netherlands Cancer Institute
Plesmanlaan 121
1066CX Amsterdam
The Netherlands
The LiFe-Guard Study: Surveillance, including WB-MRI in Li-Fraumeni Syndrome.
Marielle W.G. Ruijs, MD, PhD
Family Cancer Clinic
Department of Clinical Genetics
The Netherlands Cancer Institute
Office phone: +31 20 5127829
Email: m.ruijs@nki.nl
Gabe S. Sonke, MD, PhD
Department of Medical Oncology
The Netherlands Cancer Institute
Office phone: +31 20 5122951
Email: g.sonke@nki.nl
Eveline M.A. Bleiker, PhD
Department of Psychosocial Research and Epidemiology
The Netherlands Cancer Institute
Office phone: +31 20 5122480
Email: e.bleiker@nki.nl
Clinical Genetics Service
Manchester Centre for Genomic Medicine
Central Manchester University Hospitals NHS Foundation Trust
Saint Mary’s Hospital
Oxford Road, Manchester. M13 9WL
Tel: 0161 701 5104
Fax: 0161 276 6145
www.mangen.org.uk
Manchester Centre for Genomic Medicine includes: Clinical Genetics Service |Genomic Diagnostics Laboratory | Willink Biochemical Genetics Unit | Bioinformatics Group | University of Manchester Genetic Medicine | NIHR Genetics Clinical Trials Unit
Lead –Professor D Gareth Evans, Consultant in Medical Genetics
Dr Emma, Woodward Consultant in Medical Genetics
Dr Fiona Lalloo, Consultant in Medical Genetics
Dr Tara Clancy, Genetic counsellor
Dr Richard Whitehouse, Consultant Neuroradiologist for whole body MRI
NCI-Designated Cancer Centers
Most large cancer centers have knowledge and expertise in hereditary cancer syndromes and have cancer genetics clinics that can help you with counseling, testing, surveillance & management, and cancer treatment. Not all of these centers will have the ability to do whole body MRI or to follow individuals with LFS for their annual surveillance – you will need to check ahead of scheduling an appointment.
Additionally, your state’s health department may provide a listing online for cancer genetics counselors, such as this list for the state of New York. Genetic counselors have a comprehensive network and can help navigate your best options for care.
