North Dakota

Suggest a Resource

 

Achondroplasia
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org

 

Angelman syndrome
Epilepsy Foundation of Minnesota
1600 University Avenue, Suite 300
St. Paul, MN, 55104
Website: http://www.efmn.org

North Dakota Speech-Language-Hearing Association
800 12th Ave NE, Apt 212
Jamestown, ND 58401
Website: http://www.minotstateu.edu/ndslha

Special Format Library
North Dakota State Library
Talking Book Services
604 E. Boulevard Avenue, Department 250
Bismarck, ND, 58505-0800
Website: http://www.library.nd.gov/talkingbooks.html

 

Autism
Autism Society of America ND
Phone: (301) 657-0881, (800) 328-8476
Website: http://www.autism-society.org

Red River Valley Asperger-Autism
P.O. Box 281
West Fargo, ND 58078
Phone: (701) 566-1675
Contact: JoAnne Vieweg
Email: jrview@cableone.net
Website: 
http://www.rrvan.org

Group Support:
The Online Autism Support Group ND
Website: http://www.autism-blog.com

Other Organizations:
Family Voices of North Dakota
PO Box 163 312 2nd Ave. W
Edgeley, ND 58433
Phone: (888) 522-9654
Contact: Donene Feist
Email: fvnd@drtel.net
Website: http://www.fvnd.org

Additional Resources: http://wwww.autismspeaks.org/resource-guide/state/ND

 

Blind
Educational Services:
North Dakota Department of Public Instruction
Office of Special Education
600 East Boulevard Avenue
Bismarck, ND 58505-0440
Phone: (701) 328-2277
Fax: (701) 328-4149
TDD/TTY: (701) 328-4920
Website: http://www.dpi.state.nd.us/

North Dakota Vision Services/School for the Blind
500 Stanford Road
Grand Forks, ND 58203-2799
Phone: (701) 795-2700
Fax: (701) 795-2727
Toll-Free: (800) 421-1181
Email: gbornsen@nd.gov
Website: http://www.ndvisionservices.com

NLS Library:
North Dakota State Library: Talking Book Services
604 East Boulevard Avenue
Department 250
Bismarck, ND 58505-0800
Phone: (701) 328-1408
Fax: (701) 328-2040
Toll-Free: (800) 843-9948
TDD/TTY: (701) 328-4923
Email: tbooks@nd.gov
Website: http://library.nd.gov/talkingbooks.html

Other Agencies:
North Dakota Developmental Disabilities Unit
Department of Human Services
1237 West Divide Avenue. Suite 1A
Bismarck, ND 58501
Phone: (701) 328-8936
Toll-Free: (701) 328-8969
Email: dhsds@nd.gov
Website: http://www.nd.gov/dhs/services/disabilities/earlyintervention/

North Dakota Vision Resource Center
North Dakota Vision Services/School for the Blind
500 Stanford Road
Grand Forks, ND 58203-2799
Phone: (701) 795-2700
Fax: (701) 795-2727
Website: http://www.ndvisionservices.com/services/vision-resource-center.html

 

Cleft Palate and/or Cleft Lip
Bismarck North Dakota Cleft Lip and Palate Team – CPT
600 E Boulevard Ave Dept 301
Bismarck, ND 58505-0602
Phone: (701) 328-2436
Fax: (701) 328-1645
Patient Age Range: 0-21
Team Leader: Rick L. Paulson, MD
Coordinator: Kim Hruby, RN, MSN
Email: dohcshsadm@nd.gov
Website: http://www.ndhealth.gov/cshs/clinic.htm

 

Developmental Disabilities
The Arc of North Dakota, Inc.
P.O. Box 2081
Bismarck, ND  58502-2081
Phone: (701) 222-1854
Email: executive_director@thearcofbismarck.org
Twitter: http://www.twitter.com/arcofbismarck

 

Diaphragmatic Hernia
Contact: Donna Stolz
Email: NorthDakota@cherubs.org
Phone: (612) 709-1238

 

Down syndrome
Designer Genes of North Dakota
Bismarck, ND
Email: info@designergenesnd.com
Website: http://www.designergenesnd.com

 

Dwarfism
Contact: Shannon Ciardelli
Email: shannon@aspenelectricinc.com
Website: http://www.lpadistrict9.org

 

Edwards syndrome
Waubay, SD
Contact: Gloria Jorgenson
Phone: (605) 947-4752
Email: Gloriajayne1957@gmail.com

 

Epilepsy
Epilepsy Foundation Minnesota
1600 University Ave W #300
Saint Paul, Minnesota 55104-3800
United States
Phone: (651) 287-2300
Toll Free: (800) 779-0777

 

Hydrocephalus
Forgo & Moorhead MN Area
Contact: Briana Scearcy
Email: FargoMoorheadCommunity@hydroassoc.org

 

Intellectual Disabilities
The Arc of North Dakota, Inc.
P.O. Box 2081
Bismarck, ND  58502-2081
Phone: (701) 222-1854
Email: executive_director@thearcofbismarck.org
Twitter: http://www.twitter.com/arcofbismarck

 

Patau syndrome
Waubay, SD
Phone: (605) 947-4752
Contact: Gloria Jorgenson
Email: Gloriajayne1957@gmail.com

 

Pierre Robin Sequence
North Dakota Cleft Lip and Palate Team – CPT
600 E Boulevard Ave Dept 301
Bismarck, ND 58505-0602
Phone: (701) 328-2436
Fax: (701) 328-1645
Patient Age Range: 0-21
Team Leader: Rick L. Paulson, MD
Coordinator: Kim Hruby, RN, MSN
Email: dohcshsadm@nd.gov
Website: http://www.ndhealth.gov/cshs/clinic.htm

 

Tessier Cleft
North Dakota Cleft Lip and Palate Team – CPT
600 E Boulevard Ave Dept 301
Bismarck, ND 58505-0602
Phone: (701) 328-2436
Fax: (701) 328-1645
Patient Age Range: 0-21
Team Leader: Rick L. Paulson, MD
Coordinator: Kim Hruby, RN, MSN
Email: dohcshsadm@nd.gov
Website: http://www.ndhealth.gov/cshs/clinic.htm

 

Trisomy 9
Waubay, SD
Phone: (605) 947-4752
Contact: Gloria Jorgenson
Email: Gloriajayne1957@gmail.com

 

Online Support:
Achondroplasia: Achondroplasia
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: North Dakota Autism Center IncFamily Voices of North Dakota Autism Support Page
Bi-lateral Renal Agenesis: Bi-lateral Renal Agenesis (Potters Syndrome)
Blind: Family ConnectBlind and visually impaired support group
Bohring-Optiz syndrome: Bohring-Optiz Syndrome Connection
Cerebral Palsy: Cerebral Palsy World Wide
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 
Diaphragmatic Hernia: North Dakota Cherubs-Congenital Diaphragmatic Hernia
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: National Down Syndrome Society
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 Support Group, EPILEPSY
Hydrocephalus: State of North Dakota Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group
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: Spina Bifida Parents Group, Spina Bifida Support Group
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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