Hawaii

Suggest a Resource

 

Achondroplasia
Contact: Jon Welch
Email: welchparty@comcast.net
Website: http://www.lpad12.org

 

Angelman syndrome
Assistive Technology Resource Centers of Hawaii
414 Kuwili Street, Suite 104
Honolulu, HI, 96817-5050
Phone: (800) 645-3007
V/TTY: (808) 532-7110
Email: jodi@atrc.org
Website: http://www.atrc.org

Epilepsy Foundation of Hawaii
501 Sumner Street, PH4
Honolulu, HI, 96817-5003
Phone: (808) 528-3058
Email: director-efh@hawaiiepilepsy.com
Website: http://www.hawaiiepilepsy.com/efh

Hawaii Speech-Language-Hearing Association
P.O. Box 235888
Honolulu, HI, 96823
Phone: (808) 528-4742
Email: hsha_membership@yahoo.com
Website: http://www.hsha.org

 

Autism
Full Life
120 Keawe Street, Hilo, HI 96720 Suite 202
Hilo, HI 96720
Phone: (808) 935-7699
Contact: Stone Wolfsong
Email: stone@fulllifehawaii.org
Website: http://www.fulllifehawaii.org

Assisting with Appropriate Rights in Education
200 North Vineyard Boulevard Suite 310
Honolulu, HI 96817
Phone: 808 536 9684, (808) 536-2280
V/TTY: 800 533 9684

Easter Seals Hawaii
710 Green St.
Honolulu, HI 96813
Email: Info@eastersealshawaii.org
Website: http://www.easterseals.com/hawaii

Support Groups:
Autism Awareness Puna
P.O. Box 2121
Pahoa, HI 96778
Phone: (808) 217-2810
Email: ichitt@aol.com

Malama Pono Autism Center
100 Kahelu Ave. Suite 112
Mililani, HI 96789
Phone: (808) 450-3080
Contact: Taffy Perucci
Email: TaffyP@mpautismcenter.org
Website: http://www.malamaponoautismcenter.org

Autism Comprehensive Educational Services
94-849 Lumi’aina St. Suite 201
Waipahu, HI 96797
Phone: (808) 294-7050
Website: http://www.ACESaba.com

Additional Resources: https://www.autismspeaks.org/resource-guide/state/HI

 

Blind
Educational Services:
Hawaii Department of Education
Special Education Services Branch
1390 Miller Street Honolulu, HI 96813
Phone: (808) 586-3230
Website: http://www.hawaiipublicschools.org/TeachingAndLearning/SpecializedPrograms/SpecialEducation/Pages/home.aspx

Instructional Materials Center
Hawaii School for the Deaf and the Blind
3440 Leahi Avenue
Honolulu, HI 96815
Phone: (808) 733-4999
Fax: (808) 733-4824
Website: http://www.hcdb.k12.hi.us/

NLS Library
Hawaii State Library
Library for the Blind and Physically Handicapped
402 Kapahulu Avenue
Honolulu, HI 96815
Phone: (808) 733-8444
Fax: (808) 733-8449
Toll-Free: (800) 559-4096
TDD/TTY: (808) 733-8444
Email: olbcirc@librarieshawaii.org
Website: http://www.librarieshawaii.org/lbph

Other Agencies:
Eye of the Pacific Guide Dogs and Mobility Services
747 Amana Street, #407
Honolulu, HI 96814
Phone: (808) 941-1088
Fax: (808) 944-9368
Email: Info@EyeOfThePacific.Org
Website: http://www.eyeofthepacific.org/

Hawaii Early Intervention Section Department of Health
1350 South King Street Suite 200
Honolulu, HI 96814
Phone: (808) 594-0000
Fax:  (808) 594-0015
Toll-Free: (800) 235-5477
Website: http://health.hawaii.gov/eis/

 

Cerebral Palsy
UCP of Hawaii
414 Kuwili St. Suite 104
Honolulu, HI 96817
Phone: (808) 532-6744
Twitter: @UCPAHI
Website: http://www.ucpahi.org

 

Congenital Heart Defect
ACHD Clinic of Hawaii
Pacific Health Straub Medical Center
888 S. King St.
Honolulu, HI  96701
Phone: (808) 522-4222
Medical Contact: Lorelei J. Repique, MD, FACC

 

Cleft Palate and/or Cleft Lip
Honolulu Cleft Lip & Palate Multi-Disciplinary Team Hawaii
Kaiser Region – CPT
Kaiser Permanente Moanalua Specialty Clinics
3288 Moanalua Rd
Honolulu, HI 96819-1469
Phone: (808) 432-5609
Fax: (808) 432-5601
Patient Age Range: 0-21
Team Leader: Marsha Marumoto, MD, FAAP
Coordinator: Amber Luu, FNP, APRN-Rx
Email: amber.m.luu@kp.org

Honolulu Kapi’olani Cleft and Craniofacial Center – CPT, CFT
1319 Punahou St
Honolulu, HI 96826-1001
Phone: (808) 983-6879
Fax: (808) 983-6387
Patient Age Range: 0-21
Team Leader: Helen Lau, CPNP; Joan Meister, MD
Coordinator: Helen Lau, CPNP
Email: helen.lau@kapiolani.org
Website: http://www.kapiolani.org/cleft

TAMC Tripler Army Medical Center Cleft Team – CPT
Tripler Army Medical Center
3C ENT Clinic
TAMC, HI 96859
Team Phone: (808) 433-3206
Team Fax: (808) 433-9033
Patient Age Range: 0-99
Team Leader: Jared Theler, MD
Coordinator: Mary Jane C. Bayudan-Puyaoan, RN
Email: maryjane.c.bayudanpuyaoan.civ@mail.mil

 

Developmental Disabilities
The Arc in Hawaii
3989 Diamond Head Road
Honolulu, HI 96816-4413
Phone: (808) 737-7995
Email: info@thearcinhawaii.org
Website: http://www.thearcinhawaii.org

 

Down syndrome
Down Syndrome ‘Ohana of Hawaii
Honolulu, HI
Phone: 808-843-2502
Email: ds_ohana@yahoo.com
Website: http://www.dsohawaii.com

 

Dwarfism
Contact: Jon Welch
Email: welchparty@comcast.net
Website: http://www.lpad12.org

 

Edwards syndrome
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Epilepsy
Epilepsy Foundation Hawaii
1050 Ala Moana Blvd, Suite 2550
Honolulu, Hawaii 96814-4932
Phone: (808) 528-3058
Toll Free: (866) 528-3058

 

Intellectual Disabilities
The Arc in Hawaii
3989 Diamond Head Road
Honolulu, HI 96816-4413
Phone: (808) 737-7995
Email: info@thearcinhawaii.org
Website: http://www.thearcinhawaii.org

 

Patau syndrome
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Pierre Robin Sequence
Honolulu Cleft Lip & Palate Multi-Disciplinary Team Hawaii
Kaiser Region – CPT
Kaiser Permanente Moanalua Specialty Clinics
3288 Moanalua Rd
Honolulu, HI 96819-1469
Phone: (808) 432-5609
Fax: (808) 432-5601
Patient Age Range: 0-21
Team Leader: Marsha Marumoto, MD, FAAP
Coordinator: Amber Luu, FNP, APRN-Rx
Email: amber.m.luu@kp.org

Honolulu Kapi’olani Cleft and Craniofacial Center – CPT, CFT
1319 Punahou St
Honolulu, HI 96826-1001
Phone: (808) 983-6879
Fax: (808) 983-6387
Patient Age Range: 0-21
Team Leader: Helen Lau, CPNP; Joan Meister, MD
Coordinator: Helen Lau, CPNP
Email: helen.lau@kapiolani.org
Website: http://www.kapiolani.org/cleft

TAMC Tripler Army Medical Center Cleft Team – CPT
Tripler Army Medical Center
3C ENT Clinic
TAMC, HI 96859
Team Phone: (808) 433-3206
Team Fax: (808) 433-9033
Patient Age Range: 0-99
Team Leader: Jared Theler, MD
Coordinator: Mary Jane C. Bayudan-Puyaoan, RN
Email: maryjane.c.bayudanpuyaoan.civ@mail.mil

 

Prader- Willi syndrome
Phone: (800) 926-4797
Email: chapters@pwsausa.org

 

Tessier Cleft
Honolulu Cleft Lip & Palate Multi-Disciplinary Team Hawaii
Kaiser Region – CPT
Kaiser Permanente Moanalua Specialty Clinics
3288 Moanalua Rd
Honolulu, HI 96819-1469
Phone: (808) 432-5609
Fax: (808) 432-5601
Patient Age Range: 0-21
Team Leader: Marsha Marumoto, MD, FAAP
Coordinator: Amber Luu, FNP, APRN-Rx
Email: amber.m.luu@kp.org

Honolulu Kapi’olani Cleft and Craniofacial Center – CPT, CFT
1319 Punahou St
Honolulu, HI 96826-1001
Phone: (808) 983-6879
Fax: (808) 983-6387
Patient Age Range: 0-21
Team Leader: Helen Lau, CPNP; Joan Meister, MD
Coordinator: Helen Lau, CPNP
Email: helen.lau@kapiolani.org
Website: http://www.kapiolani.org/cleft

TAMC Tripler Army Medical Center Cleft Team – CPT
Tripler Army Medical Center
3C ENT Clinic
TAMC, HI 96859
Team Phone: (808) 433-3206
Team Fax: (808) 433-9033
Patient Age Range: 0-99
Team Leader: Jared Theler, MD
Coordinator: Mary Jane C. Bayudan-Puyaoan, RN
Email: maryjane.c.bayudanpuyaoan.civ@mail.mil

 

Trisomy 9
Contact: Barb VanHerreweghe
Phone: (800) 716-SOFT
Email: barbsoft@rochester.rr.com

 

Online Support:
Achondroplasia: LPA District 12
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: Hawaii Autism Ohana,
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: UCPA Hawaii-United Cerebral Palsy Association
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 , Arc Hawaii 
Diaphragmatic Hernia: Hawaii Cherubs- Congenital Diaphragmatic Hernia Charity 
DiGeorge syndrome: DiGeorge Syndrome, 22q11.2 Deletion, DiGeorge, VCFS etc
Down syndrome: Down syndrome Support for Mommies, Parents of Children with Down syndrome, Down syndrome
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: Hawaii Epilepsy Warriors Support Group, Epilepsy Foundation of Hawaii 
Hydrocephalus: Hydrocephalus Support Group, Hydrocephalus 
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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