This site was created by parents wanting to learn, and educate others, about Ellis-van Creveld Syndrome.  We are the ones who are teaching the medical profession regarding the day-to-day living with Ellis-van Creveld Syndrome.  Members of our support group are of different ages and backgrounds, all united to strengthen our community in a common bond.  We welcome new members and parents of children with Ellis-van Creveld Syndrome.

Our Mission

The Ellis-van Creveld Syndroms (EvC) Foundation is dedicted to providing emotional and practical support to people who are affected by this syndrome, and their friends and family.  We can provide information for families to share with their medical professionals.  We can also provide details of medical professionals with experience of treating EvC related problems.  Our other aim is to raise fund for reseach into EvC.

Who We Are

We are just parents who have found each other in their quest to do the best they can for their child/children.  That is a parent's most fundamental job.

 Our children are thriving and living to the best of their abilities.  Contact us and learn how to help your child.