Centers of Excellence

Centers of Excellence

Born a Hero, Research Foundation has undertaken on the Centers of Excellence project to learn more about the craniofacial centers that treat FGFR conditions. Through site visits and surveys, we are working to personally connect with teams across the country. The following Centers of Excellence have all completed our surveys about their institution and specialties, and we have highlighted important information from each. Our goal is to gather and share information about a variety of centers to help streamline the process of choosing a center for primary craniofacial care or second opinions for our FGFR patients and caregivers. Please note that this content is for informational purposes only and does not constitute an endorsement or certification from Born a Hero.

 Centers

Boston Children's Hospital Craniofacial Center

Institution Primary Address: 300 Longwood Ave, Boston, MA, 02115

Website : https://www.childrenshospital.org/programs/craniofacial-program
Craniofacial Coordinator :
- Samantha Hall
- [email protected]
- 617-355-6309
John Meara, MD, DMD
Estimated Number of Patients with FGFR Syndromes Treated: >60
Total Size of Multidisciplinary Craniofacial Team: ~24
Opportunities for Financial Assistance: No

UPMC Children's Hospital of Pittsburgh Cleft Craniofacial Center

Institution Primary Address : 4401 Penn Ave, Pittsburgh, PA 15224
Website : https://www.chp.edu/our-services/plastic-surgery/services/cleft-craniofacial
Craniofacial Coordinator :
- Matthew Ford
- [email protected]
- 412-692-8650
Craniofacial Director: Jesse Goldstein, MD
Estimated Number of Patients with FGFR Syndromes Treated: >40
Total Size of Multidisciplinary Craniofacial Team: ~25
Opportunities for Financial Assistance: Yes

Children's Hospital of Philadelphia

Institution Primary Address : 3401 Civic Center Blvd, Philadelphia, PA 19104
Website : https://www.chop.edu/centers-programs/craniofacial-program
Craniofacial Coordinator :
- Alexis Brandemarti
- [email protected]
- 215-590-2208
-Jesse Taylor,
-[email protected]
Craniofacial Director: Logan Kelley
Estimated Number of Patients with FGFR Syndromes Treated: >70
Total Size of Multidisciplinary Craniofacial Team: ~40
Opportunities for Financial Assistance: Yes

Cincinnati Children's Hospital Medical Center

Institution Primary Address : 3333 Burnet Ave, Cincinnati, OH 45229
Website : https://www.cincinnatichildrens.org/service/c/craniofacial
Craniofacial Coordinator :
- Veronika Elsaesser
- [email protected]
- 513-636-4726
- Jessica Weberding
- [email protected].
Craniofacial Director: Jesse Skoch, MD (Neurosurgery) & Brian Pan, MD (Plastic Surgery)
Estimated Number of Patients with FGFR Syndromes Treated: >80
Total Size of Multidisciplinary Craniofacial Team: TBD
Opportunities for Financial Assistance: No

Icahn School of Medicine at Mount Sinai- Division of Plastic and Reconstructive Surgery

Institution Primary Address : 5 East 98th Street, New York, New York 10029
Website : https://www.mountsinai.org/care/surgery/services/plastic-surgery/reconstructive/craniofacial
Craniofacial Coordinator :
- Diosnelly Laro
- [email protected].
- 212-241-5873
Craniofacial Director: Peter J. Taub, MD, MS
Estimated Number of Patients with FGFR Syndromes Treated: >60
Total Size of Multidisciplinary Craniofacial Team: 20
Opportunities for Financial Assistance: Yes

Seattle Children's Hospital

Institution Primary Address : 4800 Sand Point Way NE, Seattle, WA 98105
Website : https://www.seattlechildrens.org/clinics/craniofacial
Craniofacial Coordinator :
- Michael Cunningham
- [email protected]
- 206-987-2528
Craniofacial Director: Michael Cunningham (Medical), Richard Hopper (Surgical)
Estimated Number of Patients with FGFR Syndromes Treated: >80
Total Size of Multidisciplinary Craniofacial Team: NA
Opportunities for Financial Assistance: Yes

The Craniofacial Center

Institution Primary Address : 7777 Forest Lane, C-700, Dallas, TX 75230
Website : http://www.thecraniofacialcenter.com/
Craniofacial Coordinator :
- Stephanie McDonald
- [email protected]
- 972-566-6464
Craniofacial Director: Jeffrey A. Fearon, MD
Estimated Number of Patients with FGFR Syndromes Treated: > 130
Total Size of Multidisciplinary Craniofacial Team: NA
Opportunities for Financial Assistance: Yes

University of California– San Francisco Craniofacial Center

Institution Primary Address : 1825 Fourth St., Fifth Floor, 5C, San Francisco, CA 94143
Website : https://craniofacialcenter.ucsf.edu/clinical
Craniofacial Coordinator :
- Eve Rorison, PNP
- [email protected]
- 415-476-2271
Craniofacial Director: Jason Pomerantz, MD FACS FAAP
Estimated Number of Patients with FGFR Syndromes Treated: > 100
Total Size of Multidisciplinary Craniofacial Team: NA
Opportunities for Financial Assistance: Yes