Louisiana

Suggest a Resource

Achondroplasia
Contact: Ruth Stratton

Angelman syndrome
Louisiana Assistive Technology Access Network
P.O. Box 14115
Baton Rouge, LA, 70898
Epilepsy Foundation of Louisiana
3701 Canal Street, Suite H
New Orleans, LA, 70119
Louisiana Speech-Language-Hearing Association
8550 United Plaza Boulevard, Suite 1001
Baton Rouge, LA, 70809

 

Autism

Autism Answers of Louisiana

1206 JW Davis Drive Suite 105

Hammond, LA 70403

Phone: (985) 549-0836
Fax: (985) 549-0837
Contact: Jolene Barlow
Autism Society-Louisiana State Chapter, Inc.

P.O. Box 80162

Baton Rouge, LA 70898

Phone: (800) 955-3760
Contact: Pat Giamanco

Resource Center for Autism Spectrum Disorders

2356 Drusilla Lane

Baton Rouge, LA 70809

Phone: (225) 236-3053, (877) 711-5382
Contact: Sandra Trammell
Support Groups:
Ascension Parish Autism Support Group

15297 Stone Hedge Drive

Prairieville, LA 70769

Phone: (225) 622-0323
Contact: Sandra Trammell
Tangipahoa Autism Network Group

15481 W Club Deluxe Rd

Hammond, LA 70403

Contact: Sherri Houin

 

Blind
Educational Services:

Louisiana Department of Education: Division of Special Populations
Clairborne Building
1201 North Third Street
Baton Rouge, LA 70802-5243
Phone: (225) 342-3633
Fax: (225) 342-5880
TDD/TTY: (225) 219-4588
School for the Blind
Louisiana School for the Visually Impaired
2888 Brightside Lane
Baton Rouge, LA 70820
Phone: (225) 757-3482
Fax: (225) 757-3486
Rehabilitation Services:
Lighthouse Louisiana
123 State Street
New Orleans, LA 70118
Phone: (504) 899-4501
Fax: (504) 895-4162
Toll-Free: (888) 792-0163
NLS Library:
State Library of Louisiana Services for the Blind and Physically Handicapped
701 N Fourth Street
Baton Rouge, LA 70802
Phone: (225) 342-4944
Fax: (225) 342-6817
Toll-Free: (800) 543-4702
Other Agencies:
Affiliated Blind of Louisiana
409 West St. Mary Boulevard
Lafayette, LA 70506
Phone: (337) 234-6492
Fax: (337) 232-4244
Toll-Free: (800) 319-4444
TDD/TTY: (337) 264-9259
Louisiana Association for the Blind
1750 Claiborne Avenue
Shreveport, LA 71103
Phone: (318) 635-6471
Fax: (318) 635-8902
Toll-Free: (877) 913-6471
Louisiana Center for the Blind
101 South Trenton Street
Ruston, LA 71270
Phone: (318) 251-2891 (Local)
Fax: (318) 251-0109 (Fax)
Toll-Free: (800) 234-4166 (Toll-Free)
Louisiana Early Steps
Louisiana Department of Health and Hospitals
Office for Citizens with Developmental Disabilities
628 North Fourth Street
Baton Rouge, LA 70821-3117
Phone: (225) 342-0095
Fax: (225) 342-8823
Toll-Free: (800) 783-5553
Louisiana Instructional Materials Center
2888-B Brightside Lane
Baton Rouge, LA 70802
Phone: (225) 757-3478
Fax: (225) 757-3479
Training, Resource and Assistive-Technology Center (TRAC)
University of New Orleans
2000 Lakeshore Drive
Oliver St. Pe Center/TRAC Building
New Orleans, LA 70148
Phone: (504) 280-5700
Fax: (504) 280-5707
Cerebral Palsy
UCP of Baton Rouge
1805 College Drive
Baton Rouge, LA 70808
Phone: (225) 923-3420
Website: http://www.mcmainscdc.org
UCP of Greater New Orleans
2200 Veterans Memorial Blvd. Suite 103
Kenner, LA 70062
Phone (504) 461-4266
Twitter @UCPGNO
Website http://ucpgno.org
Congenital Heart Defect
Adult Congenital Heart Clinic
Ochsner Medical Center
New Orleans, LA
Phone: (504) 842-0650
Medical Director: Sangeeta Shah, MD

 

Cleft Lip and/or Pallete
Our Lady of the Lake Children’s Hospital Cleft and Craniofacial Team – CPT, CFT

4950 Essen Ln
4th Floor, Ste 402
Baton Rouge, LA 70809-3738
Phone: (225) 765-1765

Fax: (225) 765-1999

Patient Age Range: 0-99
Team Leader: Laura Toups Hetzler, MD
Team Coordinator: Vickie Turbeville, LPN
Cleft Palate/Craniofacial Team – CPT, CFT
Children’s Hospital
200 Henry Clay Ave
New Orleans, LA 70118-5720
Phone: (504) 896-9857

Fax: (504) 894-5563

Patient Age Range: 0-99
Team Leader: Michael H. Moses, MD
Team Coordinator: Mary Ellen Alexander, RN, MN
Ochsner Craniofacial Team – CPT, CFT
Ochsner Children’s Health Center
1315 Jefferson Hwy
New Orleans, LA 70121-2406
Phone: (504) 842-4000 x62189

Fax: (504) 703-8350

Patient Age Range: 0-18
Team Leader: Daniel R. Bronfin, MD
Team Coordinator: Colleen A. Buchler-Block, MS
Ark-La-Tex Cleft and Craniofacial Team – CPT, CFT
2508 Bert Kouns Industrial Loop Ste 410
Shreveport, LA 71118-3157
Phone: (318) 675-6128

Fax: (318) 675-8081

Patient Age Range: 0-21
Team Leader: Diane M. Dunki Jacobs Nolten, RN
Team Coordinator: G. E. Ghali, DDS, MD; Jennifer E. Woerner, DMD, MD

Crouzon syndrome

Children’s Hospital, New Orleans
Craniofacial Team
200 Henry Clay Avenue
New Orleans, LA 70118
Director: Michael H. Moses, MD
Coordinator: Mary Ellen Alexander, RN, MN
Phone: (504) 896-9857
Website: www.neworleanscleftteam.org
Ochsner Craniofacial Team
1315 Jefferson Highway
New Orleans, LA 70121-2406
Phone: (504) 842-4000 x 62189
Director: Daniel Bronfin, MD
Coordinator: Colleen Buchler-Block
Phone: (866) 624-7637

Developmental Disabilities

The Arc of Louisiana
606 Colonial Drive Suite G
Baton Rouge, LA  70806
Phone: (225) 383-1033

Diaphragmatic Hernia
Contact: Lisa Thibeau
Phone: (317) 858-5073
Email: Indiana@cherubs.org
 Down Syndrome
Down Syndrome Awareness Group
Baton Rouge, LA
Down Syndrome Association of Acadiana
Lafayette, LA
Phone: (337) 234-3109
Website: www.dsaa.info
Down Syndrome Association of Greater New Orleans
New Orleans, LA
Phone: (504) 259-6201
Up with Downs
Shreveport, LA
Phone: (318) 797-8575
Upside Downs, Inc.
Thibodaux, LA
Phone: (985) 447-8188

Dwarfism

Contact: Ruth Stratton

Website: www.lpadistrict8.weebly.com

Edwards syndrome ”

Contact: Ashlea and Bradley Valentine
Denham Springs, LA
225-270-1327
Contact: Maria Revere
Lafayette, LA
985-507-6377
Epilepsy
Epilepsy Foundation Louisiana
4137 Sherwood Forest Blvd., Suite 210
Baton Rouge, Louisiana 70816
Phone: (225) 298-5499
Toll Free: (800) 960-0587

Intellectual Disabilities 
The Arc of Louisiana

606 Colonial Drive Suite G
Baton Rouge, LA  70806
Phone: (225) 383-1033

Patau Syndrome

Contact: Ashlea and Bradley Valentine
Denham Springs, LA
Phone: (225) 270-1327
Contact: Maria Revere
Lafayette, LA
Phone: (985) 507-6377


Pierre Robin Syndrome

Our Lady of the Lake Children’s Hospital Cleft and Craniofacial Team – CPT, CFT
4950 Essen Ln
4th Floor, Ste 402
Baton Rouge, LA 70809-3738
Phone: (225) 765-1765

Fax: (225) 765-1999

Patient Age Range: 0-99
Team Leader: Laura Toups Hetzler, MD
Team Coordinator: Vickie Turbeville, LPN
Cleft Palate/Craniofacial Team – CPT, CFT
Children’s Hospital
200 Henry Clay Ave
New Orleans, LA 70118-5720
Phone: (504) 896-9857

Fax: (504) 894-5563

Patient Age Range: 0-99
Team Leader: Michael H. Moses, MD
Team Coordinator: Mary Ellen Alexander, RN, MN
Ochsner Craniofacial Team – CPT, CFT
Ochsner Children’s Health Center
1315 Jefferson Hwy
New Orleans, LA 70121-2406
Phone: (504) 842-4000 x62189

Fax: (504) 703-8350

Patient Age Range: 0-18
Team Leader: Daniel R. Bronfin, MD
Team Coordinator: Colleen A. Buchler-Block, MS
Ark-La-Tex Cleft and Craniofacial Team – CPT, CFT
2508 Bert Kouns Industrial Loop Ste 410
Shreveport, LA 71118-3157
Phone: (318) 675-6128

Fax: (318) 675-8081

Patient Age Range: 0-21
Team Leader: Diane M. Dunki Jacobs Nolten, RN
Team Coordinator: G. E. Ghali, DDS, MD; Jennifer E. Woerner, DMD, MD

 

Prader-Willi syndrome ”

PWSA of Louisiana
312 Valencia Drive
Luling, LA 70070
Contact: Patsy White
Phone: (985) 722-7226

Tessier cleft

Our Lady of the Lake Children’s Hospital Cleft and Craniofacial Team – CPT, CFT
4950 Essen Ln
4th Floor, Ste 402
Baton Rouge, LA 70809-3738
Phone: (225) 765-1765

Fax: (225) 765-1999

Patient Age Range: 0-99
Team Leader: Laura Toups Hetzler, MD
Team Coordinator: Vickie Turbeville, LPN
Cleft Palate/Craniofacial Team – CPT, CFT
Children’s Hospital
200 Henry Clay Ave
New Orleans, LA 70118-5720
Phone: (504) 896-9857

Fax: (504) 894-5563

Patient Age Range: 0-99
Team Leader: Michael H. Moses, MD
Team Coordinator: Mary Ellen Alexander, RN, MN
Ochsner Craniofacial Team – CPT, CFT
Ochsner Children’s Health Center
1315 Jefferson Hwy
New Orleans, LA 70121-2406
Phone: (504) 842-4000 x62189

Fax: (504) 703-8350

Patient Age Range: 0-18
Team Leader: Daniel R. Bronfin, MD
Team Coordinator: Colleen A. Buchler-Block, MS
Ark-La-Tex Cleft and Craniofacial Team – CPT, CFT
2508 Bert Kouns Industrial Loop Ste 410
Shreveport, LA 71118-3157
Phone: (318) 675-6128

Fax: (318) 675-8081

Patient Age Range: 0-21
Team Leader: Diane M. Dunki Jacobs Nolten, RN
Team Coordinator: G. E. Ghali, DDS, MD; Jennifer E. Woerner, DMD, MD

 

Trisomy 9

Contact: Ashlea and Bradley Valentine
Denham Springs, LA
Phone: (225) 270-1327
Contact: Maria Revere
Lafayette, LA
Phone: (985) 507-6377
Turner’s syndrome
Cardiology:
Louisiana Cardiology Association
Our Lady of the Lake Physician Group
7777 Hennessy Blvd
Baton Rouge, Louisiana 70808
Phone: (225) 767-3900

 

Online Support:
Achondroplasia: LPA District 8 TX and LA
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 Speaks National Capital Area
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: United Cerebral Palsy, United Cerebral Palsy of Greater New Orleans
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 Louisiana
Diaphragmatic Hernia: CDH Warrior Community Diaphragmatic HerniaLouisiana Cherubs – Congenital Diaphragmatic Hernia Charity
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: National Down Syndrome Society
Dwarfism: Dwarfism, Little People of the World OrganizationLPA District 8 TX and LA
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
Hydrocephalus: State of Louisiana Hydrocephalus Association Community Network
Hydrops Fetalis: Hydrops Fetalis Support Group, Hydrops Fetalis Parents Support Group
Intellectual Disability: Intellectual Disabilities Support Group, The Arc of Louisiana
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, PWSA – USA Louisiana
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: United By Spina bifida
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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