| Autism |
Autism Society of Oregon (ASO) |
1-888-288-4761 www.autismsocietyoregon.org |
Autism-specific resources and information, “Take a Break” funding, support and guidance. Resource directory of autism-related services and supports. Calendar of trainings and support groups for all types of disability. |
| Cerebral Palsy and Related Disorders |
United Cerebral Palsy (UCP) |
503-777-4166 x332 www.ucpaorwa.org/familysupport.html |
Serves families whose children experience disabilities that mimic Cerebral Palsy as well as those with the diagnosis of CP. Conferences, trainings, parent support, “Respitality” program, and more. |
| Deaf and Hard of Hearing |
Hands and Voices of Oregon |
541-241-6048 www.handsandvoicesor.org |
Support and information for all Oregon families raising children who are Deaf or Hard of Hearing. All communication methods and technologies are supported. |
| Down syndrome |
Down Syndrome Network Oregon (DSNO) |
971- 910-3766 www.dsno.org |
Offers a range of community-based programs to build an outstanding support organization for families, friends and individuals with Down syndrome. |
| Epilepsy |
Epilepsy Foundation of Oregon |
206-487-4189 www.facebook.com/EpilepsyOR |
Offers parent support group every month via Zoom. For Zoom link and to be added to our parent list please contact oregon@efa.org. |
| Emotional, mental, or behavioral health needs |
Reach Out Oregon |
833-732-2367 www.reachoutoregon.org/ |
Warmline, live chat, or email support for parents of youth with emotional, behavioral or mental health needs. ROO can connect families to regional support groups; call for locations. |
| Kidney diseases or renal failure |
Northwest Kidney Kids |
503- 893-5671 www.nwkidneykids.org/ |
Support and education for children/young adults with chronic kidney disease and their families. Camps, family/sibling support, clinical Support, Young Ambassadors, and mentoring for ESRD, dialysis, and transplant. |
| Mental illness (all ages) |
NAMI Oregon - multiple chapters/groups |
503-230-8009 www.namior.org |
Peer-led support groups for parents, adults, and family members of children and adolescents with mental health and behavior issues. |
| Sickle Cell Anemia |
Sickle Cell Anemia Foundation of Oregon |
503-249-1366 www.sicklecelloregon.org/ |
Helps patients/families with advocacy, support groups, education, genetic counseling and referral, special projects, and moral supports. |
| Tourette Syndrome |
Tourette Association of Oregon |
ts.salemor@gmail.com www.facebook.com/groups/248082781935842/about/ |
Support for families raising children who experience Tourette Syndrome and co-occurring conditions. Educational materials, new patient/family/teen materials, teacher/provider materials, family-to-family connections and more. |
| Fetal Alcohol Syndrome |
FASD Collaborative Project |
The FASD United Family Navigator program provides individuals living with fetal alcohol spectrum disorders (FASD), their family members, caregivers and supporters with expert, confidential support and referrals. This includes people who are pregnant or intending to become pregnant that may have questions about alcohol or substance use. |
The FASD Collaborative Project is proud to offer 30 online support groups for self-advocates, parents, caregivers, and birth families in the FASD community. |
| Fetal Alcohol Syndrome |
FASD United family navigator program |
202-785-4585 985+966https://fasdunited.org/family-navigator/ |
The FASD United Family Navigator program provides individuals living with fetal alcohol spectrum disorders (FASD), their family members, caregivers and supporters with expert, confidential support and referrals. This includes people who are pregnant or intending to become pregnant that may have questions about alcohol or substance use. |
| Charcot Marie Tooth Syndrom |
Charcot Marie Tooth Association |
https://www.cmtausa.org/emotional-support-group/ |
The CMTA Emotional Support Group (ESG) is a place where you have the opportunity to discuss the emotional challenges of living with CMT. |
| Hemophilia |
Pacific NW Bleeding Disorders |
(541) 753-0730 https://www.pnwbd.org/ |
Foundation provides programs and services that promote and support knowledge, health, and advocacy for all people whose lives are affected by bleeding disorders. |
| Scoliosis |
Curvey Girls |
https://www.curvygirlsscoliosis.com/ |
Peer support for girls with scoliosis |
| Prader Willi Syndrome |
Prader Willi Syndrome Association (PWSA) |
https://www.pwsausa.org/ |
Family support including crises line |
| Congenital Heart Defects |
Mended Little Hearts |
https://mendedhearts.org/about-us/about-mended-little-hearts/ |
Peer support for families |
| Congenital Heart Defects |
Sisters by Heart |
https://www.sistersbyheart.org/ |
Support for families affected by single ventricle heart disease |
| Juvenile Diabetes |
Breakthrough T1D of Oregon/SW Washington Juvenile Diabetes Research Foundation |
https://www.breakthrought1d.org/oregonsouthwestwa/ |
Support information and research for families impacted by Type 1 Diabetes |
