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
To schedule an appointment, please call 617-355-8794
Cincinnati Children’s Hospital Medical Center
Dr. Nicole Weaver, 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 Colorado
Noonan Syndrome/RASopathy Multidisciplinary Clinic
Kathryn Chatfield, MD, PhD
13123 East 16th Ave
Aurora CO 80045
Contact up to July 1, 2022:
VAC/ Noonan syndrome/RASopathies Administrative Service Coordinator: Panny Brentlinger
(720) 777-8604
FAX: (720) 777-7271
Contact after July 1, 2022:
Leslie McCallen MS, CGC
(720) 777-2149
Leslie.mccallen@childrenscolorado.org
NOTE:
If you are currently a patient at Children’s Hospital Colorado (CHCO), please have any CHCO care provider contact Dr. Chatfield to schedule intake.
If you are not currently a patient at CHCO, please contact Leslie McCallen MS, CGC (after July 1, 2022) for a clinic intake.
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
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
Ann & Robert H. Lurie Children’s Hospital of Chicago
Dr. Carlos Prada
Division Head, Genetics, Genomics, and Metabolism
225 E Chicago Avenue, Chicago, Illinois 60611
RASopathy Program: https://www.luriechildrens.org/en/specialties-conditions/rasopathy-program/
CFC Overview: https://www.luriechildrens.org/en/specialties-conditions/cardiofaciocutaneous-syndrome/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
To schedule an appointment, please call 212-241-8662.
Nemours Alfred
DuPont Children’s Hospital
MAP Program
Dr. Karen Gripp, Division Chief, Division of Genetics
1600 Rockland Road
Wilmington, DE 19803
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
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
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
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
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
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
To schedule an appointment, please call 801-213-3599.
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
To schedule an appointment, please call ++49-391-6715062.
Human Genetics
Specialized Clinics
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
Phone:
0161-2766903 (Direct)
0161-7012335 (Mrs Dermody)
