Welcome to The CARE Community

We serve the craniofacial microsomia community, which includes individuals born with craniofacial microsomia and their families, healthcare teams, researchers, advocacy groups, education systems, policy makers, and members of the public.

We seek to learn and share about the lived experiences of the craniofacial microsomia community to improve well-being and to make a lasting difference to the craniofacial microsomia journey both now and in the future. 

In order to use consistent language in our work, we consider craniofacial microsomia to be a broad term that also includes the following diagnoses: microtia, hemifacial microsomia, Goldenhar syndrome, and Oculo-Auriculo-Vertebral Spectrum (OAVS).

Community Features

We aim to serve as a resource hub for families so that they can find the information they need. Families in our community can find local support groups, glossaries of medical terms, and much more!

We hope to provide families with the latest craniofacial microsomia news and updates. Learn about the latest happenings, read about recent findings without the medical jargon, or listen to your favorite researchers talk about their work!

Either through participation in our CARE interview studies or taking part in our ‘Share your story’ site feature, we seek to provide families with a way to share their story and connect with other members the craniofacial microsomia community!

Research

Craniofacial Care community members can learn about and enroll in the latest craniofacial microsomia studies, as well as learn about recent study findings and discoveries in the field of craniofacial research!

Educational Resources

Explore our collection of resources, designed specifically for families that have members with craniofacial microsomia. Make sense of any medical jargon with our curated, bilingual glossaries or learn more about craniofacial microsomia and hearing amplification devices. You can even find craniofacial team care nearest to you!

Meet Our Team

The CARE team is made up of researchers, parent advocates, and providers from a variety of disciplines. Learn more about what motivates each of us to learn more about and how to best assist families of children with craniofacial microsomia.

The CARE Registry is Coming Soon!

Our team, made up of researchers and patient advocates, is currently working hard to develop the best registry we can.

The CARE Registry will be an international, web-based registry that will collect information from you each year. The CARE Registry is a tool that will help us answer questions about craniofacial microsomia. We will do this by collecting data from patients and their families who are generous enough to share their experience with us. Participation in the CARE Registry is a way to have your story heard, to add to our collective understanding of craniofacial microsomia, and to participate in a community.
Additional purposes are to:

· Collect your research ideas and priorities

· Answer research questions important to you

· Share data that describes the CARE registry participants

· Identify individuals who are interested in participating in other research opportunities

*We recommend that you use a desktop or laptop to when completing the registry surveys.

Contact Us!

Please contact us if you have questions by filling out this form. The information you provide will be e-mailed to us at carestudy@seattlechildrens.org. Someone from the CARE Study Team will reach out to you within 1 week.

Disclaimer: This site is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. Through this site and linkages to other sites, we provide general information for educational purposes only. The information provided in this site, or through linkages to other sites, is not a substitute for medical or professional care, and you should not use the information in place of a visit, call consultation or the advice of your physician or other healthcare provider.