Welcome

The Oregon Family to Family Health Information Center supports families and caregivers of children with special health needs when navigating complex health care systems.  Staffed by parents of children and youth with a variety of health conditions, we provide free one-to-one support, training, and printed materials to families and professionals who serve them.   This website houses hundreds of resources for parents, grandparents, and youth. 

We do our best to keep this website current, but please let us know if you find any broken or outdated links.

Oregon Family to Family HIC newsletter, news and resources you can use

February 2024 Youth Spotlight, Youth leadership, Tall or Small, New rules for OHP, lets connect

January 2024 Tools you can use, ADRC, Grandparent spotlight, medical genetics services event.

November 2023 Preparing your child for events, Adoption Month, Parent Spotlight, Gas Fireplace safety

October 2023 Parent Spotlight, Sharing diagnosis with child and others,  Northwest PANDAS/PANS,

September 2023 Caring for yourself while caring for others, Youth Spotlight, New state policies- No shortened days, medical necessity for OHP ages 0-21

July 2023 Gearing Up for Healthy School Year, Parent Spotlight, Genetics Resource, Guide to Genetic Referrals,

June 2023 Genetics Journey, Parent Spotlight, Outdoor tips, Screen time tips, upcoming events

May 2023 Medical Stress, Parent Spotlight, cartoon, pool safety, upcoming events

September 2022 Cartoon, Equity for black youth, HERO- kids, Transition video, School health plans

July 2022 Oregon Kinship Navigator, ADA is 32, Healthier Oregon, Avoid summer sunburns

June 2022  Parent Spotlight, Paid family caregivers, Surprise medical bills being outlawed, Seizure study, Financial beginnings classes for youth

April 2022  Parent Spotlight, Neurology visit tool, Car seat selection, tube feeding risk, Assistive tech. lemon law

February 2022  Parent Spotlight, Table Talks, Internet discounts, AAP family blog, Community Partners Council

December 2021  Parent Spotlight, Who ya gonna call?, Get kids moving, Move to Oregon, Insurance help.

November 2021  Parent Spotlight, Service dogs, Smoothing Transition to Adult Healthcare, Join OR Commission on ASD, Supporting Siblings

October 2021 Parent spotlight, Right wheelchair tips, Resources for rare diseases, Right support for your young adult.

September 2021 Healthcare goals for IEP, Take care of yourself, coordinating your coordinators, Family Organization spotlight.

August 2021 Resources for every "condition", Family organization spotlight, Study of Oregon youth with complex medical conditions, Child tax credit.

July 2021  Moving from Pediatric to Adult Health Care, Parent spotlight, Oregon Kinship Navigator, Input to improve PT for children with cerebral palsy.

June 2021  Safe summer activities, Parent spotlight, Parent advocacy training, LEND fellowship, Emergency broadband program

May 2021 Successful hospital stays, Parent spotlight ,Table Talk, I/DD state council, Help with insurance premiums

April 20211  Covid Vaccines, Help for medical bills, Parent spotlight, Table Talks, Parents as paid, in-home providers, Legislative session

Please let us know if you would like to be on our mailing list   for periodic newsletters

Our newest video: Black Children and Youth with Special Health Needs: Families Navigate Oregon's Broken Systems

This powerful town hall conversation explores the systems barriers faced by Black families in Oregon navigating health care and other systems. We explore how to improve the experience and outcomes for both Families and providers working with children and youth with special health needs. There are insights that are helpful to both families and providers no matter what community you are from. Thank you to Family Voices' FAM U project and OHSU's Health Equity and Anti-Racism Talks for their financial and technical support and to our planning team of community members.