Resources Results
Congenital Cytomegalovirus Foundation
Website: http://www.congenitalcmv.org/
National CMV Foundation
Website: https://www.nationalcmv.org
Facebook: National CMV Foundation
Support Groups
Facebook:
CMV Mommies
CMV “The Forgotten Virus”
Sanford Health Cleft Lip and Palate Team – CPT
1310 West 22nd Street
Sioux Falls, SD 57105-1501
Phone: (605) 328-8200
Contact: Erin Burtis
Email: erin.burtis@sanfordhealth.org
Website: http://www.sanfordhealth.org
Craniofacial Anomalies and Cleft Lip and Palate Team – CPT, CFT
Medical University of South Carolina
135 Rutledge Avenue
Msc 550
Charleston, SC 29425-8908
Phone: (843) 792-3251
Contact: Chirstopher M. Discolo
Email: poinsetd@musc.edu
Website: http://www.musckids.org/our-services/cleft-palate-program
Support Groups for Cystic Hygroma
Cleft and Craniofacial Center – CPT, CFT
Hasbro Children’s Hospital
2 Dudley Street
MOC-180
Providence, RI 02905-3236
Phone: (401) 444-2299
Contact: Gena Felix
Email: Gena.Felix@Lifespan.org
Website: http://www.hasbrochildrenshospital.org/cleft-and-craniofacial
Cleft-Craniofacial Center – CPT, CFT
Children’s Hospital of Pittsburgh of UPMC
One Childrens Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224-1529
Phone: (412) 692-8650
Contact: Matthew Ford
Email: matthew.ford@chp.edu
Website: http://www.chp.edu/CHP/cleftcranio
Crouzon syndrome
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/crouzon-syndrome/
FACES: https://www.faces-cranio.org/crouzon
Support Groups for Crouzon syndrome
Children’s Hospital of Philadelphia Cleft and Craniofacial Team – CPT, CFT
Department of Plastic and Reconstructive Surgery
9th Floor CTRB
3501 Civic Center Blvd
Philadelphia, PA 19104
Phone: (215) 590-2208
Contact: Meg A. Maguire
Email: maguirema@email.chop.edu
Website: http://www.chop.edu/service/plastic-and-reconstructive-surgery/home.html
Lancaster Cleft Palate Clinic – CPT, CFT
223 North Lime Street
Lancaster, PA 17602-2748
Phone: (717) 394-3793 Ext: 116
Contact: Andrea Weaver
Email: aweaver@cleftclinic.org
Website: http://www.cleftclinic.org
Little Bear Sees
Website: http://littlebearsees.org/
Cleft Palate Craniofacial Disorders Program – CPT, CFT
707 SW Gaines Street
Portland, OR 97239-2901
Phone: (503) 494-8088
Contact: Maureen J. Oliverio
Email: oliverio@ohsu.edu
Website: http://www.ohsu.edu/xd/health/services/doernbecher/programs-services/cleft-palate-craniofacial.cfm
Support Groups
Kaiser Permanente Northwest Cleft Palate Clinic – CPT
Kaiser Sunnybrook ENT Clinic
9900 SE Sunnyside Road
Clackamas, OR 97015-9777
Phone: (503) 571-9138
Contact: Kelly Hockett
Email: kelly.j.hockett@kp.org
Website: http://kp.org
Support Groups
Facebook: Cornelia De Lange Syndrome
World Federation of CdLS Support Groups: http://www.cdlsworld.org
CdLS Foundation
Website: http://www.cdlsusa.org/
Cleft Lip & Palate Center/Center for Complex Craniofacial Disorders – CPT, CFT
Nationwide Children’s Hospital
700 Childrens Drive
Suite T2H
Columbus, OH 43205-2664
Phone: (614) 722-5821
Contact: Amanda M. Smith
Email: Amanda.Smith2@nationwidechildrens.org
Website: http://www.nationwidechildrens.org/cleft-lip-palate-center
Genetic and Rare Disease Information Center
The Clubfoot Club!
Website: https://clubfootclub.org/
Ponseti International
Website: http://www.ponseti.info/
Global Clubfoot Initiative
Website: http://globalclubfoot.com/
Cure
Website: https://cure.org/clubfoot/