Ellis-van Creveld Syndrome
EvC Support Group Website
This site was started by Patti Olesik, a wonderful woman, who
along with her husband Joe, and Liz Surek realised the potential
for group support on the Internet for parents of kids with EvC.
EvC Parent Support Group
This is a Yahoo group for members only. It is easy to join, just
submit your details to have your membership OK'd. I have found
the other parents I've met so reassuring and helpful, especially
at the hardest times. Patti, Carol, and I are the moderators. We share
stories and photos, and give and receive advice.
Restricted Growth Association
A registered charity (UK) supporting families where one or more
members have restricted growth. They organise events like
conventions and sports days. It can be great for your kid to
compete in a fairer environment.
Child Growth Foundation
You can find contact details for this charity (UK) here. One
mother I chat to online says that their conventions are a hoot
because they cover restricted AND accelerated growth conditions,
so the kids learn to accept one another's differences very
Little People of America
An excellent resource for people with restricted growth
Online Mendelian Inheritance in Man (OMIM)
The genetics site for professionals and scientists.
Congenital Heart Defects
CHD Support Group (UK)
This is a Yahoo group for parents of kids with congenital heart
defects. It's run by Dan and he'll make sure you receive a warm
A site for children with a CHD and their families. You don't
have to join this to be able to use the message board
Nemours Cardiac Centre
The Nemours Cardiac Centre is in Wilmington Delaware in the U.S.
They deal with all the cases of children with EvC from the Amish
community so that makes them the world experts. I think they
have some of the best descriptions and diagrams of congenital
heart defects too. They also describe some of the procedures
like cardiac catheter tests and echocardiography.
Royal Children's Hospital Melbourne
A site which also explains some of the heart defects encountered
by our children
Aaron's Tracheostomy Page
A great resource for parents whose kids have tracheostomies
Aid for Children with Tracheostomies
A UK-based charity providing practical support and advice for
carers of kids with a tracheostomy. They have a useful welcome
pack for new members.
Part of the Columbus
Children's Hospital website. You can find details of the
lateral thoracic expansion operation here. This operation is
fairly experimental (has been carried out on about 17
children), but if your child is still ventilated after the
age of 2, it may be worth investigating. This should not be
considered as a cosmetic procedure.
The VEPTR (vertical
expanding prosthetic titanium rib) is another type of
procedure which can be used to expand a ribcage. Details can
be found at this website, though it details the type of
operation done to correct scoliosis (curvature of the spine)
rather than chest expansion. The chest expansion procedure
uses very curved titanium ribs, but the basic principles
thereafter are the same. So far (2007) this procedure has
been carried out on about 30 children. Email -
- for more
details. She is the head nurse for the project.
Minnesota Limb Lengthening Center
A site with clear
pictures and x-rays of limb-lengthening and growth plate
stapling. It does not refer to kids with skeletal dysplasias,
however, so I put this link here merely for the pictures,
not the text.
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