Resources Results
Foundations for Independence- Cerebral Palsy of Utah
Website: http://www.ffiutah.org/
United Cerebral Palsy
Website: http://ucp.org/
Alobar Holoprosencephaly
Genetic and Rare Disease Information Center: https://rarediseases.info.nih.gov/diseases/6665/holoprosencephaly/cases/27877
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/holoprosencephaly/
Amniotic Band syndrome
Website: https://amnioticbandsyndrome.com/
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/amniotic-band-syndrome/
Support Groups for Aplasia Cutis Congenita
Facebook: Aplasia Cutis Congenita Support Group
Aplasia Cutis Congenita
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/aplasia-cutis-congenita/
Support Groups for Athrogryposis
Facebook: Arthrogryposis
Athrogryposis
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/arthrogryposis-multiplex-congenita/
Support Groups for Asparagine Synthetase
Bilateral Renal Agenisis
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/renal-agenesis-bilateral/
Bohring-Optiz Syndrome Foundation
1310 Egypt Road
P.O. BOX 832
Oaks, PA 19456
Email: info@bos-foundation.org
Website: http://bos-foundation.org/
Support Groups for CAMK4 mutation
Support Groups
Autism Speaks
Website: https://www.autismspeaks.org/
Ataxic Cerebral Palsy
CP Family Network: http://cpfamilynetwork.org/
Cerebral Palsy Guide: https://www.cerebralpalsyguide.com/cerebral-palsy/types/ataxic/
Cerebral Palsy Alliance: https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/types-of-cerebral-palsy/ataxic-cerebral-palsy/
Support Groups
Cleft Palate and Craniofacial Center at Stony Brook Medicine – CPT, CFT
Stony Brook University
T19060 Health Sciences Center
Stony Brook, NY 11794-8191
Phone: (631) 444-8167
Contact: Kristen Santos
Email: kristen.santos@stonybrookmedicine.edu
Website: http://medicine.stonybrookmedicine.edu/surgery/patient-care/clinical/plastic-reconstructive-surgery/CPCF-Center
Cleft and Craniofacial Center – CPT, CFT
UR Medicine’s Golisano Children’s Hospital
601 Elmwood Avenue # 661
Rochester, NY 14642-0001
Phone: (585) 276-4653
Contact: Melisande J. Ploutz
Email: melisande_mccheyne@urmc.rochester.edu
Website: http://www.urmc.rochester.edu/childrens-hospital/craniofacial.aspx
Weill Cornell Medicine Craniofacial Program – CPT, CFT
428 E 72nd Street
Office 100
New York, NY 10021-4635
Phone: (212) 746-1274; (646) 962-4321
Contact: Ashley O’Connor
Email: aer9007@med.cornell.edu
Website: http://weillcornellbrainandspine.org/craniofacial
Mount Sinai Craniofacial & Cleft Center – CPT
Division of Plastic and Reconstructive Surgery
Mount Sinai Medical Center
5 East 98th Street
Box 1259
New York, NY 10029
Phone: (212) 241-4178
Contact: Michelle Castro
Email: michelle.castro1@mountsinai.org
Website: http://www.mountsinai.org/patient-care/service-areas/surgery/divisions/plastic-and-reconstruction-surgery/craniofacial-surgery
Craniofacial Team – CFT
NYU Langone Medical Center, Wyss Department of Plastic Surgery
Lower Level
307 East 33rd Street
New York, NY 10016-9401
Phone: (212) 263-5211
Contact: Selena Papaconstantinou
Email: papacs01@nyumc.org
Website: http://plastic-surgery.med.nyu.edu/patient-care/craniofacial-center-pediatric
Cleft Palate Team – CPT
Wyss Department of Plastic Surgery
Lower Level
307 East 33rd Street
New York, NY 10016-9401
Phone: (212) 263-5203
Contact: Shelley R. Cohen
Email: cohens08@nyumc.org
Website: http://plastic-surgery.med.nyu.edu/patient-care/cleft-lip-palate-center
Hagedorn Cleft Palate & Craniofacial Center – CPT, CFT
South Entrance
225 Community Drive
Great Neck, NY 11021-5503
Phone: (516) 466-2990
Contact: Linda C. Dunckley
Email: ldunckley@northwell.edu
Website: http://www.northshorelij.com/hospitals/location/hagedorn-cleft-palate-craniofacial-center-location
Craniofacial Center of Western New York – CPT, CFT
Women and Children’s Hospital of Buffalo, Kaleida Health
Oishei Children’s Outpatient Center, Floor 3
1001 Main Street
Buffalo, NY 14203-1009
Phone: (716) 323-6060
Contact: Janice R. Rockwood
Email: jrockwood@kaleidahealth.org
Website: http://www.kaleidahealth.org/childrens/services