Resources Results
Support Groups
Support Groups for Encephalocele
Encephalocele
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/encephalocele/
Hope for Trisomy 13 & 18
Support Groups for Edwards syndrome
SOFT
Website: http://trisomy.org/
Trisomy 18 Foundation
Website: https://www.trisomy18.org/
Little People of America
Website: http://www.lpaonline.org/
Cleft Lip & Palate – Craniofacial Anomalies Clinic – CPT, CFT
University of Wisconsin
G5/357 Highland Ave # 600
Madison, WI 53792-0001
Phone: (608) 263-2376
Contact: Mary Kay Brekke
Email: cleft@surgery.wisc.edu
Website: http://www.uwhealthkids.org/pediatric-reconstructive-surgery/cleft-lip-and-palate/craniofacial-anomalies-clinic/34418
FACES Cleft/Craniofacial Team – CPT, CFT
830 Pennsylvania Avenue
Suite 302
Charleston, WV 25302-3390
Phone: (304) 388-2958
Contact: Rhonda Crede
Email: rhonda.crede@camc.org
Website: http://www.camc.org/faces
Support Groups
Central Washington Cleft Palate Program – CPT
Children’s Village
3801 Kern Way
Yakima, WA 98902-6340
Phone: (509) 574-3268
Contact: Cathy Buchanan
Email: cathybuchanan@yvmh.org
Website: http://yakimachildrensvillage.org
Down Syndrome World
Website: https://downsyndromeworld.org/
National Down Syndrome Society
Website: http://www.ndss.org/
Global Down Syndrome Foundation
Website: https://www.globaldownsyndrome.org/
DiGeorge syndrome
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/chromosome-22q11-2-deletion-syndrome/
Seattle Children’s Craniofacial Center – CPT, CFT
4800 Sand Point Way NE MS Ob
Seattle, WA 98105-3901
Phone: (206) 987-2208
Contact: Marsha Ose
Email: Craniofacial.RN@seattlechildrens.org
Website: http://www.seattlechildrens.org/clinics-programs/craniofacial
The 22q Family Foundation
Website: http://22qfamilyfoundation.org/
The International 22q11.2 Foundation Inc.
Website: http://www.22q.org/
Cleft and Craniofacial Team at St. Mary’s – CPT, CFT
5875 Bremo Road
Suite 104
Richmond, VA 23226-1934
Phone: (804) 287-7396
Contact: Linda Shait
Email: Linda_Shait@bshsi.org
Website: http://www.stmaryscleftteam.com
Support Groups
Center for Craniofacial Care – CPT, CFT
PO Box 980154
Richmond, VA 23298-0154
Phone: (804) 828-3042
Contact: Ruth Trivelpiece
Email: ruth.trivelpiece@vcuhealth.org
Website: http://www.craniofacial.vcu.edu
Breath of Hope
Website: http://breathofhopeinc.com/
Children’s Hospital of the King’s Daughters (CHKD) Craniofacial Center – CPT, CFT
601 Childrens Lane
Norfolk, VA 23507-1910
Phone: (757) 668-7031
Contact: Karen Via
Email: karen.via@chkd.org
Website: http://www.chkd.org