National Autism Association
One Park Avenue, Suite 1
Portsmouth, RI 02871
Phone: (877) 622-2884
Email: naa@nationalautism.org
Foundation: https://aicardisyndromefoundation.org/aicardi-syndrome/
Genetics Home Reference: https://ghr.nlm.nih.gov/condition/aicardi-syndrome
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/aicardi-syndrome/
Genetic and Rare Disease Information Center: https://rarediseases.info.nih.gov/diseases/6665/holoprosencephaly/cases/27877
Blindskills
P.O.Box 5181
Salem, OR 97304-0181
Phone: (503) 581-4224
Fax: 503-581-0178
Toll-Free: (800) 860-4224
Email: info@blindskills.com
Devers Memorial Eye Clinic
1040 NW 22nd Avenue
Portland, OR 97210
Phone: (503) 413-8499
Fax: 503-413-7006
Website: http://www.legacyhealth.org/locations/clinics/specialty-clinics/legacy-devers-eye-institute-vision-rehabilitation.aspx
Cerebral Palsy Guide: https://www.cerebralpalsyguide.com/cerebral-palsy/types/ataxic/
Cerebral Palsy Alliance: https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/types-of-cerebral-palsy/ataxic-cerebral-palsy-ataxia/
UCP of Oregon & SW Washington
305 Northeast 102nd Avenue
Suite 100
Portland, OR 97220
Phone: (503) 777-4166
Website: http://www.ucpaorwa.org
Resources
cerebralpalsyguidance.com
Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/diseases-by-category/36/chromosome-disorders
Children’s Craniofacial Association
Website: http://www.ccakidsblog.org/
Website: https://www.thecleftfoundation.org/
7777 Forest Lane
Suite C-616
Dallas, Texas 75230 USA
Phone: +1 (972) 566-6669
Toll Free: (800) 533-3315
Email: info@worldcf.org
Website: http://worldcf.org/index.html
Oregon
3303 SW Bond Avenue
9th Floor
Portland, OR 97239
Phone: (503) 494-1775
Director: Craig Broberg, MD, MCR
Oregon
2405 Front Street NE
Suite 120
Salem, OR 97301-0724
Phone: (503) 581-2726
Email: info@thearcoregon.org
Oregon
Hayden, OR
Phone: (208) 755-5079
Email: info@downsyndromeconnections.com
Website: http://www.downsyndromeconnections.com
PO Box 140
Stillwater, MN 55082
Phone: (612) 460-0765
Email: info@dsdiagnosisnetwork.org
American Association on Intellectual and Developmental Disabilities
Website: https://aaidd.org/
Website: http://www.parentcenterhub.org/intellectual/
https://rarediseases.org/rare-diseases/mccune-albright-syndrome/
MAGIC Foundation: https://www.magicfoundation.org/Growth-Disorders/McCune-Albright-Syndrome-or-Fibrous-Dysplasia/
Fibrous Dysplasia Foundation: https://www.fibrousdysplasia.org/
Oregon
Oregon Health & Science University
3181 S.W Sam Jackson Park Rd.
Mail Code: CR113
Portland, OR 97239-3098
Pediatrics: (503) 346-0640
Adults: (503) 494-3273
Contact: Chaim Vanek, MD
Website: https://www.ohsu.edu/xd/
Oregon
Randall Children’s Hospital Pediatric Genetics at Legacy Emanuel Program
2801 N. Gantenbein Ave.
Portland, OR 97227
Phone: (503) 413-4505
Contact: George Anadiotis, DO
Website: http://www.legacyhealth.org
Oregon
Shriners Hospital for Skeletal Dysplasia Clinic Children
3101 S.W. Sam Jackson Park Rd.
Portland, OR 97239
Phone: (503) 221-3422
Contacts: Dennis Roy, MD and Lindsey Nicol, MD
Website: https://www.shrinershospitalsforchildren.org/portland
Oregon
Forest Grove, OR
Phone: (503) 992-0494
Contact: Jerry and Beverly Frawley
Email: angelhome99@yahoo.com
Oregon
Forest Grove, OR
Contact: Jerry and Beverly Frawley
Phone: (503) 992-0494
Email: angelhome99@yahoo.com
Oregon
1101 NE 219 Street
Ridgefield, WA 98642
Phone: (360) 609-5197
Contact: Vonnie Sheadel
Email: vsheadel@gmail.com
Oregon
2344 Banyonwood Avenue NW
Salem, OR 97304
Phone: (503) 362-8062
Contact: Kathy Snyder
Email: athleenasnyder@gmail.com
No Limits Foundation: https://nolimitsfoundation.org/
Adventure Amputee Camp: https://adventureamputeecamp.org/
Ampucamp: http://www.ampucamp.org/
Website: http://helpinghandsgroup.org/
Website: https://jordanthomasfoundation.org/
Website: http://neversayneverfoundation.org/
Website: https://givenlimb.org/
Website: http://specialneedsmomsformoms.com/
Website: http://mommiesofmiracles.com/
Oregon
P.O. Box 523
Salem, OR 97308
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