Links to Relevant Resources

This is a curated short list of key resources that have been put together by patient advocates and our team. There are many other worthwhile resources.

Community Support Groups

  • Microtia and atresia support group (Facebook link)

  • Goldenhar support group (Facebook link)

  • myFace support groups (also see myFace) (link)

  • Camp Korey (adaptive year-round programs for children and their families living with life-altering medical conditions)

Craniofacial Associations and Organizations

  • Ear Community (earcommunity.org)

  • American Cleft Palate and Craniofacial Association (ACPA)

  • FACES - National Craniofacial Association (FACES)

  • Cleft Lip & Palate Association (CLAPA) 

  • World CF (link)

  • Ameriface - Cleft and Craniofacial advocates (link) 

  • myFace - non-profit organization dedicated to changing the faces – and transforming the lives – of children and adults with facial differences (link)

  • Children’s Craniofacial Association (CCA)

  • European Cleft Palate Craniofacial Association (ECPCA)

  • International Society for Auricular Reconstruction (ISAR)

 Audiology Associations 

  • American Academy of Audiology (link) 

  • American Speech-Language-Hearing Association (ASHA)

  • International Society for Augmentative and Alternative Communication (link) 

  • Association for the Deaf and Heard of Hearing (a.g.bell)

International Resources

  • European Reference Network (will add link)

  • OTHER SUGGESTIONS WELCOME!

U.S. Mental Health Resources

  • NAMI National Association of Mental Ilness (link)

  • US Crisis Hotline (link)

US/Governmental Information