North Carolina

Suggest a Resource

 

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 ConnectBlind 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

Our whole mission at Orange Socks is to be there for you.

Our whole intent is to guide you from a resources page to a forum for parents…from the links to national organizations to providing you with support where the expectant parent can be linked with a parent who has a similar situation and diagnosis. We are there to support and encourage you.

Orange Socks knows that there is no greater pain in your heart than the knowledge that your child will be born with a disability or lifelong condition, or diagnosed with one at a very young age. And it is with tremendous humility that we look forward to helping you face this challenge. Even as your heart is heavy, there’s light at the end of every tunnel. Getting to it is our job.

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