Clinics

RASopathy Clinicians

CFC syndrome is also known as a RASopathy syndrome or one of the “RASopathies”. RASopathies are a group of rare genetic conditions caused by changes in genes of the Ras-MAPK pathway. RASopathy syndromes include:

  • Cardio-Facio-Cutaneous syndrome (CFC)
  • Costello syndrome (CS)
  • Noonan syndromess (NS)
  • Neurofibromatosis type 1 (NF1)
  • Legius syndrome
  • Noonan with Multiple Lentigines (NSML) (formerly called LEOPARD (LS))

This is a list of healthcare providers who have experience in working with children with RASopathies. If you are a doctor or work in a CFC or RASopathy clinic and would like to be added to this list, please contact us at: info@cfcsyndrome.org.

United States

Boston Children’s Hospital

Dr. Amy Roberts, Director, Cardiovascular Genetics Research Program
300 Longwood Avenue, Bader, 2nd Floor
Boston, MA 02115
View website
To schedule an appointment, please call 617-355-8794

Cincinnati Children’s Hospital Medical Center

Dr. Carlos Prada, Director, RASopathies Clinic
3333 Burnet Avenue
Cincinnati, OH 45229
For inquiries about our clinic, please contact RASopathies_Clinic@cchmc.org.
To schedule an appointment, please call 513-636-4760

Children’s Hospital of Wisconsin

Neurofibromatosis and RASopathy Center
Dr. Donald Basel, Co-Director, Genetics
Dr. Dawn Seigel, Co-Director, Pediatric Dermatologist
9000 W. Wisconsin Avenue
Wauwatosa, WI 53226
View website
To schedule an appointment, call Central Scheduling at 414-607-5280 or toll free at 877-607-5280. Physician referrals may be needed.

Children’s National Medical Center

Dr. Patroula Smpokou, Genetics
Monisha Samanta, MS Certified Genetic Councilor
Sheikh Zayed Campus
111 Michigan Ave, NW
Washington, DC 20010
The Gilbert Family Neurofibromatosis Institute

Noonan Spectrum Disorders Clinic

To schedule an appointment for either of these clinics, please call 202-476-2187
For questions or more information:
Monisha Samanta, MS – msamanta@childrensnational.org

Emory University School of Medicine

Dr. Suma Shankar, Genetics
Department of Human Genetics
615 Michael Street, Suite 301
Atlanta, GA 30322
View website

Mayo Clinic

Dr. Dusica Babovic-Vuksanovic, Director, Medical Genetics
Dr. Jennifer Hand, Medical Genetics
Neurofibromatosis and Related Disorders Clinic
Department of Medical Genetics
200 First Street SW
Rochester, MN 55905
To schedule an appointment, please call 507-538-3270.

Mount Sinai Hospital

Dr. Bruce Gelb
Director of Child Health and Development Institute
Co-Director, Cardiovascular Genetics Program
1468 Madison Ave, Suite 3-50
New York, NY 10029
View website
To schedule an appointment, please call 212-241-8662

Nemours Alfred I DuPont Children’s Hospital

MAP Program
Dr. Karen Gripp, Division Chief, Division of Genetics
1600 Rockland Road
Wilmington, DE 19803
View website
To ask questions or schedule an appointment, please contact the MAP program clinic coordinator at 302-651-5926

Stanford Children’s Health

Dr. David A. Stevenson, RASopathy Clinic Director
Pediatric Medical Genetics
Lucile Packard Children’s Hospital
730 Welch Road 2nd floor
Palo Alto, CA 94034
View website
To schedule an appointment, please call 650-721-5804

Texas Children’s Hospital

Dr. Marni Axelrad, Psychology
Pilar Magoulas, MS, Certified Genetic Counselor
6701 Fannin Street
Houston, TX 77030
View website
To schedule an appointment, please call 832-822-4288

University of Alabama at Birmingham School of Medicine

Neurofibromatosis Clinic
Dr. Bruce Korf, Director, Heflin Center for Genomic Sciences, Chair, Department of Genetics
Kaul Human Genetics Building
720 20th Street South
Birmingham, AL 35294
View website
To schedule an appointment, please call 205-934-5567.

University of California, Davis M.I.N.D. Institute

NF/Ras Pathway Genetics Clinic
Dr. Katherine Rauen
Department of Pediatrics
2825 50th St., Office 2248
Sacramento, CA, 95817
View website
Genomic Medicine
NF/Ras Pathway Genetics Clinic at UC Davis Medical Center
Elizabeth Boyd, 916-703-0317 for scheduling patients.
Liga Bivina, 916 703 0371 for general patient-related questions.

University of California, San Francisco Medical Center

NF/Ras Pathway Genetics Clinic
400 Parnassus Ave 2nd Floor
San Francisco, CA 94143
View website
For information on the UCSF NF/Ras Pathway Genetics Clinic please contact:
Janelle Arquiza, 415-514-0838, for scheduling patients.
Andrea Zanko, 415-476-9320, for urgent patient-related issues.

University of Minnesota

Dr. Mary Ella Pierpont
University of Minnesota Masonic Children’s Hospital
2450 Riverside Avenue
Minneapolis MN 55454
To schedule an appointment, call 612-365-6777 and ask for Shayna.

University of Utah

Primary Children’s Hospital
Pediatric Medical Genetics
100 Mario Capecchi Drive
Salt Lake City, UT 84113
View website
To schedule an appointment, please call 801-213-3599.

International

Germany

Institute of Human Genetics, University Hospital Magdeburg and Mitteldeutsches Kompetenznetzwerk Seltene Erkrankungen (MKSE)

Centre for RASopathies (Fachzentrum für RASopathien)
Prof. Dr. Martin Zenker
Leipziger Str. 44
39120 Magdeburg
Phone: ++49-391-6715064
Email: martin.zenker@med.ovgu.de
Human Genetics
Specialized Clinics
To schedule an appointment, please call ++49-391-6715062.

Netherlands

Erasmus University Medical Center – Sophia Children’s Hospital

Wytemaweg 80
3015 CN Rotterdam
The Netherlands
PO Box 2040
3000 CA Rotterdam
The Netherlands

CFC and CS Clinic: contact Dr. B.J. Sibbles

cfc-costello@erasmusmc.nl or phone +31107036146 (Monday-Thursday)

NF1 Clinic: contact Dr. R. Oostenbrink

Nf1centrum@erasmusmc.nl or phone +31107036146 (Monday-Thursday) or for adults: neuro-oncologie@erasmusmc.nl or phone +31107041415

United Kingdom

Clinical Genetics Service and Regional Genetics Laboratory

Manchester Centre for Genomic Medicine

Dr. Bronwyn Kerr
Consultant Clinical Geneticist/Honorary Senior Lecturer, Associate Medical Director
Clinical Effectiveness
Clinical Genetics Service
Manchester Centre for Genomic Medicine
Central Manchester University Hospitals NHS Foundation Trust
Manchester Academic Health Sciences Centre (MAHSC)
Manchester M13 9WL

Postal Address:
Manchester Centre for Genomic Medicine, 6th Floor
St Mary’s Hospital
Central Manchester University Hospitals NHS Foundation Trust
Oxford Rd
Manchester M13 9WL
United Kingdom

Phone:
0161-2766903 (direct)
0161-7012335 (Mrs Dermody)