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
If there is a resource that you'd like to suggest we add please send to info@joiefulconnections.
Our website contains links to websites owned and operated by third parties. These links are provided for your information and convenience only and are not an endorsement by Joieful Connections. Joieful Connections makes no warranties or representations, express or implied about such linked websites, the third parties they are owned and operated by, the information contained on them or the suitability or quality of any of their products or services. Joieful Connections accepts no liability for any damage or loss, however caused, in connection with the use of or reliance on any information, material, products or services contained on or accessed through any such linked website.
Copyright © 2024 Joieful Connections LLC - All Rights Reserved.
We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.