North Carolina
Achondroplasia
Contact: Stephanie Brandon
Email: sbrandon@d3lpa.org
Website: http://www.d3lpa.org/
Angelman syndrome
Epilepsy Foundation of North Carolina, Inc.
Piedmont One, Ste 5541 A
1920 W. First Street Winston Salem, NC 27104
Website: http://www.epilepsync.org
Speech, Language, and Hearing
North Carolina Speech, Hearing and Language Association
P.O. Box 28359
Raleigh, NC, 27611-8359
Website: http://www.ncshla.org
Special Format Library
North Carolina Library for the Blind and Physically Handicapped
State Library of North Carolina -Department of Cultural Resources
1811 Capital Boulevard
Raleigh, NC, 27635
Website: http://statelibrary.ncdcr.gov/lbph
Autism
Autism Society of North Carolina
P.O. Box 342
Graham, NC 27253
Phone: (919) 619-5097
Contact: Bethany Orr
Email: borr@mebtel.net
Website: http://alamanceasnc.org#sthash.oC1ZVyPW.dpuf
Arc of High Point
153 E. Bellevue Drive
High Point, NC 27265
Phone: (336) 883-0650
Contact: Teresa McKeon
Email: tmckeon@arc-of-hp.com
Website: http://www.arc-of-hp.com#sthash.DFOLoheb.dpuf
Support Group:
Adolescent and Family Enrichment Council
Parents As Teachers
450 W. Jake Alexander Blvd
Salisbury, NC 28147
Phone: (704) 630-0481
Contact: Mar-Lee Beal
Email: afecrc@salisbury.net
Additional Resources: https://www.autismspeaks.org/resource-guide/state/NC
Blind
Educational Services:
School for the Blind
Governor Morehead School
2303 Mail Service Center
301 Ashe Avenue
Administration Building
Raleigh, NC 27699-2303
Phone: (919) 733-6382
Fax: (919) 715-2206
Email: Denise.Williams@esdb.nc.gov
Website: http://www.governormorehead.net/
North Carolina Department of Public Instruction: Exceptional Children Division Education Building
301 N. Wilmington Street
Raleigh, NC 27601-2585
Phone: (919) 807-3969
Fax: (919) 807-3243
Website: http://www.ncpublicschools.org/ec/
NLS Library:
Library for the Blind and Physically Handicapped,
State Library of North Carolina
1841 Capital Boulevard
Raleigh, NC 27635
Phone: (919) 733-4376
Fax: (919) 733-6910
Toll-Free: (888) 388-2460
TDD/TTY: (919) 733-1462
Email: nclbph@ncdcr.gov
Website: http://statelibrary.ncdcr.gov/lbph
Rehabilitation Services:
North Carolina Division of Services for the Blind
2601 Mail Service Center
309 Ashe Avenue
Raleigh, NC 27699-2601
Phone: (919) 733-9822
Fax: (919) 733-9769
Toll-Free (866) 222-1546
TDD/TTY: (919) 733-9700
Email: debbie.jackson@ncnmail.net
Website: http://www.ncdhhs.gov/dsb/
Other Agencies:
Asheville Lions Eye Clinic
45-A South French Broad Avenue
Asheville, NC 28801
Phone: (828) 665-2982
Email: eyeclinic01@bellsouth.net
Early Childhood Technical Assistance Center
Campus Box 8040-UNC Chapel Hill
Chapel Hill, NC 27599-8040
Phone: (919) 962-2001
Fax: (919) 966-7463
Email: ectacenter@unc.edu
Website: http://ectacenter.org/
Exceptional Children’s Assistance Center
907 Barra Row, Suites 102/103
Davidson, NC 28036
Phone: (704) 892-1321
Fax:(704) 892-5028
TDD/TTY(800) 962-6817
Email: ecac@ecacmail.org
Website: http://ecac-parentcenter.org/
Cerebral Palsy
Easter Seals UCP North Carolina & Virginia
5171 Glenwood Ave. Suite 211
Raleigh, NC 27612
Phone: (919) 783-8898
Twitter: @ESUPC
Website: http://nc.eastersealsucp.com
CHARGE syndrome
Contact: Kim Lane
Email: Kimandmikelane@gmail.com
Congenital Heart Defect
Duke Adult Congenital Heart Disease Center
Duke University Health System
Durham, NC
Phone: (919) 684-2407
Medical Contact: Richard A. Krasuski, MD, FACC, FAHA, FESC
East Carolina Heart Institute Adult Congenital Heart Disease Program
East Carolina Heart Institute at East Carolina University
Greenville, NC
Phone: (252) 744-5601
Medical Contact: Charlie J. Sang, Jr., MD, FAPP, FACC, FSCAI
Sanger Adult Congenital Heart Disease Program
Carolinas Medical Center
Charlotte, NC
Phone: (704) 373-0212
Medical Contact: Jorge Alegria, MD, FACC, FAHA, FASE
UNC Adult Congenital Heart Disease Program
UNC Hospitals
Chapel Hill, NC
Phone: (866) 862-4327
Medical Contact: Elman Frantz, MD
Cleft Palate and/or Cleft Lip
UNC Craniofacial Center – CPT, CFT
2 Brauer Hall # 7450
Unc School of Dentistry
Chapel Hill, NC 27599-7450
Phone: (919) 537-3513
Patient Age Range: 0-99
Team Leader: Amelia F. Drake, MD
Coordinator: Darrell Keyes
Email: dkeyes@email.unc.edu
Website: https://www.dentistry.unc.edu/patientcare/craniofacial/
Carolinas Center for Cleft Lip & Palate Surgery – CPT
8840 Blakeney Professional Dr Ste 300
Charlotte, NC 28277-6749
Phone: (704) 716-9840
Fax: (704) 716-9841
Patient Age Range: 0-99
Team Leader: Richard A. Kapitan, DDS, MS
Coordinator: Nikki McCullough
Duke Cleft Palate-Craniofacial Team – CPT, CFT
Duke University Medical Center
Division of Plastic, Maxillofacial & Oral Surgery
DUMC 3974
Durham, NC 27710
Phone: (919) 684-3815
Fax: (919) 660-0591
Patient Age Range: 0-19
Team Leader: Jeffrey R. Marcus, MD
Coordinator: Ann M. Mabie-DeRuyter, MSPA
Email: ann.mabiederuyte@dm.duke.edu
Website: http://www.dukechildrens.org/services/craniofacial_program
New Hanover Regional Medical Center Cleft and Craniofacial Team – CPT
NHRMC Women’s and Children’s Hospital
PO Box 9000
Nunnelee Pediatric Specialty Clinics
Wilmington, NC 28402-9000
Team Phone: (910) 667-6406
Team Fax: 910.662.9304
Patient Age Range: 0-99
Team Leader: Michael S. Jaskolka, DDS, MD, FACS
Email: Alana.McKeever@nhrmc.org
Website: https://www.nhrmc.org/cleft
NC Center for Cleft & Craniofacial Deformities – CPT, CFT
Wake Forest Univ. School of Medicine
Medical Center Blvd
Winston Salem, NC 27157-0001
Phone: (336) 716-4579
Fax: (336) 716-9386
Patient Age Range: 0-99
Team Leader: Lisa R. David, MD
Coordinator: Edreca Allison Thompson
Email: eathomps@wakehealth.edu
Website: http://www.wakehealth.edu
Crouzon syndrome
UNC Craniofacial Center
University of North Carolina at Chapel Hill
School of Dentistry
2 Brauer Hall
Campus Box 7450
Chapel Hill, NC 27599-7450
Team Leader: Dr. Amelia Drake
Coordinator: Angie Carlton
Phone: (919) 537-3508
North Carolina Center for Cleft & Craniofacial
Bowman Gray School of Medicine
Wake Forest University
Medical Centre Boulevard
Winston-Salem, NC 27157-1075
Team Leader: Lisa R. David, MD
Coordinator: Edreca Thompson
Phone: (336) 716-4579
Email: eathomps@wakehealth.edu
Website: http://www.wakehealth.edu
Dubowitz syndrome
North Carolina State Association
Contact: Julie Bishop
Email: Bishfish@aol.com
Website: http://www.nchearingloss.org
Care Partners Health Services
Seymour Auditorium
68 Sweeten Creek Rd
Asheville, NC 28803
Phone: (828) 665-8699
Contact: Ann Karson
Email: akarson57@gmail.com
Website: http://www.nchearingloss.org/asheville.hlm
Brevard Chapter
Transylvania Regional Hospital
260 Hospital Dr
Brevard, NC 28712-3378
Contact: Kathleen Borzell
Phone: (828) 743-0150
Email: kborzell@gmail.com
NC Division of Service for the Deaf and Hard of Hearing
First Floor
5501 Executive Center Dr.
Charlotte, NC 28212
Contact: Myra White
TTY: (704) 366-0861
Email: myra@carolina.rr.com
Website: http://www.nchearingloss.org
McCarthy Court
1325 McCarthy Blvd.
New Bern, NC 28562
Contact: Cynthia Koran
Phone: (252) 444-8250
Email: cgkoran@hotmail.com
Wake Chapter
Contact: Steve Barber
Email: steve.barber@earthlink.net
Winston-Salem Chapter
Contact: William Crowley
Email: wmcrowley748bellsouth.net
Website: http://www.nchearingloss.org
Developmental Disabilities
The Arc of North Carolina
343 E Six Forks Rd Ste 320
Raleigh, NC 27609-7888
Phone: (800) 662-8706
Email: Lpoteat@arcnc.org
Website: http://www.arcnc.org
Diaphragmatic Hernia
Medical Contact: Amber Bradley
Phone: (704) 524-9819
Email: amber.bradley@cherubs.org
Contact: Karla Holt
Phone: (276) 362-5114
Email: NorthCarolina@cherubs.org
Down syndrome
Down Syndrome Association of Greater Charlotte
Charlotte, NC
Phone: (704) 536-2163
Email: info@dsa-gc.org
Website: http://www.dsa-gc.org
Down Syndrome Network of Greater Greensboro
Greensboro, NC
Phone: (336) 832-6507
Email: nickelhodges@yahoo.com
Website: http://www.team-up.org
Down Syndrome Network of Onslow & Carteret Counties
Jacksonville, NC
Phone: (910) 719-3321
Email: president@dsnocc.org
Website: http://www.dsnocc.org
Cumberland County NC Down Syndrome Association
Lillington, NC 27546
Phone: (910) 922-5024
Email: ccncdsa@gmail.com
Piedmont Down Syndrome Support Network
Pfafftown, NC
Phone: (336) 480-8871
Email: info.pddsn@gmail.com
Website: http://www.pdssn.org
Triangle Down Syndrome Network
Raleigh, NC
Phone: (919) 788-3646
Email: tdsnmail@triangledownsyndrome.org
Website: http://www.triangledownsyndrome.org
Dwarfism
Contact: Stephanie Brandon
Email: sbrandon@d3lpa.org
Website: http://www.d3lpa.org/
Edwards syndrome
Ann and Frank Barnes
Chapel hill, NC
Phone: (919) 933-9981
Email: fbarnes@nc.rr.com
Epilepsy
Epilepsy Foundation North Carolina
Piedmont One, Suite 5541A
1920 W. First Street
Winston-Salem, North Carolina 27104-4220
Phone: (336) 716-2320
Toll Free: (800) 451-0694
Hydrocephalus
Charlotte Area
Contact: Summer Minchew & Jennifer Acheson
Website: CharlotteCommunity@hydroassoc.org
Intellectual Disabilities
The Arc of North Carolina
343 E Six Forks Rd Ste 320
Raleigh, NC 27609-7888
Phone: (800) 662-8706
Email: Lpoteat@arcnc.org
Website: http://www.arcnc.org
Patau syndrome
Ann and Frank Barnes
Chapel hill, NC
Phone: (919) 933-9981
Email: fbarnes@nc.rr.com
Pierre Robin Sequence
UNC Craniofacial Center – CPT, CFT
2 Brauer Hall # 7450
Unc School of Dentistry
Chapel Hill, NC 27599-7450
Phone: (919) 537-3513
Patient Age Range: 0-99
Team Leader: Amelia F. Drake, MD
Coordinator: Darrell Keyes
Email: dkeyes@email.unc.edu
Website: https://www.dentistry.unc.edu/patientcare/craniofacial/
Carolinas Center for Cleft Lip & Palate Surgery – CPT
8840 Blakeney Professional Dr Ste 300
Charlotte, NC 28277-6749
Phone: (704) 716-9840
Fax: (704) 716-9841
Email: aarthur@mycenters.com
Patient Age Range: 0-99
Team Leader: Richard A. Kapitan, DDS, MS
Coordinator: Abby Arthur, RN, BSN
Website: https://www.mycenters.com/oral-surgeon/cleft-lip-and-palate/
Duke Cleft Palate-Craniofacial Team – CPT, CFT
Duke University Medical Center
Division of Plastic, Maxillofacial & Oral Surgery
DUMC 3974
Durham, NC 27710
Phone: (919) 684-3815
Fax: (919) 660-0591
Email: ann.mabiederuyte@dm.duke.edu
Patient Age Range: 0-19
Team Leader: Jeffrey R. Marcus, MD
Coordinator: Ann M. Mabie-DeRuyter, MSPA
Website: http://www.dukechildrens.org/services/craniofacial_program
New Hanover Regional Medical Center Cleft and Craniofacial Team – CPT
NHRMC Women’s and Children’s Hospital
PO Box 9000
Nunnelee Pediatric Specialty Clinics
Wilmington, NC 28402-9000
Phone: (910) 667-6406
Fax: (910) 662-9304
Patient Age Range: 0-99
Team Leader: Michael S. Jaskolka, DDS, MD, FACS
Coordinator: Alana McKeever, RN
Email: Alana.McKeever@nhrmc.org
Website: https://www.nhrmc.org/cleft
NC Center for Cleft & Craniofacial Deformities – CPT, CFT
Wake Forest Univ. School of Medicine
Medical Center Blvd
Winston Salem, NC 27157-0001
Phone: (336) 716-4579
Fax: (336) 716-9386
Patient Age Range: 0-99
Team Leader: Lisa R. David, MD
Coordinator: Edreca Allison Thompson
Email: eathomps@wakehealth.edu
Website: http://www.wakehealth.edu
Polymicrogyria
Contact: Kelly Powers
Email: the5powers@carolina.rr.com
Prader-Willi syndrome
PWSA of The Carolina’s
9532 Treymore Drive
Raleigh NC 27617
Phone: (919) 332-0621
Contact: Becky Smith
Email: bsmith@mattshome.com
Spina Bifida
SBA of the Carolinas
1600 Wilson Blvd, Suite 800
Arlington, VA 22209
Phone: (800) 621-3141 x20
Email: mnethercutt@sbaa.org
Web: http://www.sbancsc.org
Tessier Cleft
UNC Craniofacial Center – CPT, CFT
2 Brauer Hall # 7450
Unc School of Dentistry
Chapel Hill, NC 27599-7450
Phone: (919) 537-3513
Patient Age Range: 0-99
Team Leader: Amelia F. Drake, MD
Team Coordinator: Darrell Keyes
Email: dkeyes@email.unc.edu
Website: https://www.dentistry.unc.edu/patientcare/craniofacial/
Carolinas Center for Cleft Lip & Palate Surgery – CPT
8840 Blakeney Professional Dr Ste 300
Charlotte, NC 28277-6749
Phone: 704.716.9840
Fax: 704.716.9841
Patient Age Range: 0-99
Leader: Richard A. Kapitan, DDS, MS
Team Coordinator: Abby Arthur, RN, BSN
Email: aarthur@mycenters.com
Website: https://www.mycenters.com/oral-surgeon/cleft-lip-and-palate/
Duke Cleft Palate-Craniofacial Team – CPT, CFT
Duke University Medical Center
Division of Plastic, Maxillofacial & Oral Surgery
DUMC 3974
Durham, NC 27710
Phone: (919) 684.3815
Fax: (919) 660-0591
Patient Age Range: 0-19
Team Leader: Jeffrey R. Marcus, MD
Coordinator: Ann M. Mabie-DeRuyter, MSPA
Email: ann.mabiederuyte@dm.duke.edu
Website: http://www.dukechildrens.org/services/craniofacial_program
New Hanover Regional Medical Center Cleft and Craniofacial Team – CPT
NHRMC Women’s and Children’s Hospital
PO Box 9000
Nunnelee Pediatric Specialty Clinics
Wilmington, NC 28402-9000
Phone: (910) 667-6406
Fax: (910) 662-9304
Patient Age Range: 0-99
Team Leader(s): Michael S. Jaskolka, DDS, MD, FACS
Coordinator: Alana McKeever, RN
Email: Alana.McKeever@nhrmc.org
Website: https://www.nhrmc.org/cleft
NC Center for Cleft & Craniofacial Deformities – CPT, CFT
Wake Forest Univ. School of Medicine
Medical Center Blvd
Winston Salem, NC 27157-0001
Phone: (336) 716-4579
Fax: (336) 716-9386
Patient Age Range: 0-99
Team Leader: Lisa R. David, MD
Coordinator: Edreca Allison Thompson
Email: eathomps@wakehealth.edu
Website: http://www.wakehealth.edu
Trisomy 9
Ann and Frank Barnes
Chapel hill, NC
Phone: (919) 933-9981
Email: fbarnes@nc.rr.com
Turners syndrome
Pediatrics:
101 Kellie Dr
Smithfield, North Carolina 27577
Contact: Dr. Pennie Bliss
Phone: (919) 938-3749
Garner Location: (919) 779-4800
Psychology:
Psychology Research
343 Medical School Wing C
Campus Box #7160
Chapel Hill, North Carolina 27599
Contact: Dr. Rebecca Knickmeyer-Santelli
Phone: (919) 966-2216
Camp for TS:
Camp Carefree
275 Carefree Lane
Stokesdale, North Carolina 27357
Website: http://www.campcarefree.org/
Endocrinology:
Pediatric Endocrinology
Pediatric Endocrinology,
Wing E CB 7039,
101 Manning Dr.
Chapel Hill, North Carolina 27514
Contact:Dr. Jennifer Law
Phone: (984) 974-1401
Pediatric Endocrinology
23 Sunnybrook Rd #200
Raleigh, North Carolina 27610
Contact: Dr. Deana Adkins
Phone: (919) 684-3772
Clinics:
North Carolina Children’s Hospital
101 Manning Drive
Chapel Hill, NC 27514
Bi-Monthly/0-22 years of age
Contact: Jennifer Law, M.D.
Phone: (919) 962-2796
UNC School of Medicine Turner Syndrome Clinic
UNC Department of Pediatrics
260 MacNider Building, CB# 7220
UNC School of Medicine
Chapel Hill, NC 2759
Contact: Jennifer Leonard
Phone: (919) 966-1505
Fax: (919) 966-7299
Online Support:
Achondroplasia: LPA District 3
Aicardi syndrome: Aicardi syndrome
Alobar Holoprosencephaly: Alobar Holoprosencephaly
Amniotic Band syndrome: Amniotic band syndrome (ABS)
Angelman syndrome: Angelman Syndrome Foundation
Apert syndrome: Apert International (Apert USA)
Aplasia Cutis Congenita: Aplasia Cutis Congenita Support Group
Arthrogryposis: Arthrogryposis
Asparagine Synthetase Deficiency: Asparagine Synthetase Deficiency (ASNS gene)
Ataxic Cerebral Palsy: Families with children who have Ataxic Cerebral Palsy
Autism: Autism Society of North Carolina, Autism Charlotte
Bi-lateral Renal Agenesis: Bi-lateral Renal Agenesis (Potters Syndrome)
Blind: Family Connect, Blind and visually impaired support group, Easterseals UCP
Bohring-Optiz syndrome: Bohring-Optiz Syndrome Connection
Cerebral Palsy: Greensboro Cerebral Palsy Association-GCPA
CHARGE syndrome: CHARGE Syndrome
Congenital Heart Defect: Children with congenital heart defects, Breastfeeding Children with Congenital Heart Defects, Congenital Heart Defect Healthy Eating Group, Adults with Congenital Heart Defects
Cleft Lip/Palate: Support Group for Adults born with Cleft Lip and Palates, Cleft Lip and Palate Foundation of Smiles, Cleft Lip & Palate Association
Clubbed Feet: Clubbed Foot support group, Club Feet Support Group for Parents
Cornelia De Lange syndrome: Cornelia De Lange Syndrome
Cortical Visual Impairment: Cortical Visual Impairment (CVI) Awareness
Crouzon syndrome: Crouzon Syndrome
Cystic Hygroma: Cystic Hygroma
Cytomegalovirus (CMV): CMV Family Support
Dandy Walker syndrome: Dandy-Walker Syndrome, Dandy Walker parents,
Deaf: Community for the Deaf and Hard of Hearing, Parents of Hearing Impaired Children
Dubowitz syndrome: Dubowitz Syndrome Network
Developmental Disabilities: Developmental Disabilities Support Page , The Arc of NC
Diaphragmatic Hernia: North Carolina Cherubs – Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: Down Syndrome Association of Greater Charlotte , Triangle Down Syndrome Network
Dwarfism: Dwarfism, Little People of the World Organization,
Edwards syndrome: edwards syndrome (trisomy18), Edwards Syndrome Families & Support – Trisomy 18, Trisomy 18 Foundation Parents Connect
Encephalocele: Encephalocele Parent Support, Encephalocele Support
Epilepsy: Epilepsy Institute of North Carolina, Epilepsy of Davidson County Support of North Carolina
Hydrocephalus: State of North Carolina Hydrocephalus Association Community Network
State of Alabama Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group, The Arc of NC
Koolen de Vries syndrome: Koolen de Vries Syndrome – 17q21.31 Microdeletion Syndrome Support Group
Limb Difference: Beautiful Limb Differences, limb difference makes no difference
Lissencephaly: Lissencephaly, Lissencephaly Network
McCune-Albright syndrome: MAS/FD McCune-Albright Syndrome/Fibrous Dysplasia- The MAGIC Foundation, McCune Albright Syndrome and Fibrous Dysplasia
Microcephaly: Microcephaly Support Group, Foundation for Children with Microcephaly- Official Group, Microcephaly
Moebius syndrome: Many Faces of Moebius Syndrome, Moebius syndrome Technology
Nager syndrome: Nager Syndrome
Patau syndrome: Trisomy 13 Life- Living with Patau Syndrome
Pierre Robin Sequence: Pierre Robin Sequence, Pierre Robin Sequence Support, Awareness & Research,
Polymicrogyria: Polymicrogyria (PMG) Support, PMG Awareness Organization’s Group Page (polymicrogyria)
Potocki-Shaffer syndrome: Potocki Shaffer syndrome Family Group
PPP2R5D: PPP2R5D Families
Prader-Willi syndrome: Prader Willi Syndrome Open Forum, Prader-Willi Support
Renal Agenesis: Born With A Single Kidney
Rhizomelic Chondrodysplasia Punctata (RCDP): RCDP/Rhizomelic Chondrodysplasia Punctata
Sanfilippo syndrome: Sanfilippo syndrome Support Group
Semi-lobar Holoprosencephaly: Our Olive Grace- Semi-lobar Holoprosencephaly
Spina Bifida:The Spina Bifida Association of the Carolinas
Symbrachydactyly: Symbrachydactyly, Helping Hands (Symbrachydactyly)
Tessier cleft: Tessier Clefts
Trisomy 9: Trisomy 9 Family
Turner syndrome: Turner syndrome, Turner Syndrome Connections
VACTERL/VATER Association: VATER and VACTERL Association Awareness, Vacterl and vater Association group for parents and families
Ventriculomegaly: Ventriculomegaly, Babies with ventriculomegaly