Ellis-van Creveld (EvC) Syndrome Foundation
(Chondroectodermal Dysplasia)
17 Bridlewood Trail
Honeoye Falls, NY 14472
ph: 585-737-1500
PattiMO4
Ellis-van Creveld, EvC, is a rare hereditary condition that occurs in less than 1 in 10 million people. It is characterized by short-limbed dwarfism, additional fingers and/or toes (polydactyly), knock-knees, abnormal development of the fingernails and, in over half the cases, congenital heart defects - which are correctable.
This support group is dedicated to the education of people with this condition and their families. We have noticed that most people with EvC are bright and industrious. Given a chance, they will always find a way to do what everyone else is doing. There are many adults in our group with a variety of education and employment. EvCers have a tremendous sense of balance and are very dexterous. Some are involved in gymnastics and sports, such as baseball.
EvC children are generous of spirit and have a great ability to entertain people with their wit. When asking a parent if their child is a character, invariably the answer is 'Yes.'
There is moderate to marked short stature. Ultimate adult height is between 3 feet 8 inches (106cm/42in) and 5 feet (153cm/60in.).
There has also been a request for those families who have lost EvCers to form a spin-off support group for consolation and education.
This website is dedicated to educating families and physicians about EvC. Most people with EvC live long, fruitful lives. Many in the medical field do not realize this. Hopefully, through this site and its sister site created in the UK, we can provide a place for medical professionals with a place to learn how to deal with the irregularities that happen with EvC.
What Is Coming
We are in the process of incorporating our group. When this becomes a fact, we will be open to taking donations from those who would like to help spread the word about EvC. Our goal is to have enough information on the Internet and through referrals to inform any medical professional who have patients with this condition.
17 Bridlewood Trail
Honeoye Falls, NY 14472
ph: 585-737-1500
PattiMO4