- Home
- Parent Information
- Contact & Membership
- Family Photos & Video
- Conference photos & Videos
- Conference Videos
- 2001 Conference - Canada
- 2005 Conference - USA
- 2007 conference - USA
- 2009 conference - USA
- 2011 Conference - UK
- 2013 conference - USA
- 2015 Conference - USA
- UK CS/CFC conference 2015
- Family Stories
- Publications
- FAQ
Welcome
About our group
We’re a parent to parent support group that shares information about Costello Syndrome (CS) with parents and health providers around the world. Our aim is to gain a to
better understanding of Costello Syndrome identify the best practices in treatment for our children. But most of all we provide a support network through which families can share there own experiences and support each other through a mutual understanding. Whatever you learn from this site.. "....don't stop asking questions!" The answers may surprise you.
Our aim is to gain a better understanding of Costello Syndrome and to identify the best practices in treatment for our children. But most importantly we provide a support network through which families can share their own experiences and support each other through mutual understanding and experiences.
International Costello Syndrome websites
American Costello Syndrome Family Network
Swiss Costello Syndrome Website
IItalian syndrome websiteCostello and CFC
Family Blogs
le syndrome de costello,
ulysses et moi sucre de pasteque
Life With Bobean! Living with Costello Syndrome
Vera de Zwarte's website
Igor - Costelinho Do Norte (0n Facebook)
Was this in the plan????
Me and My Son, Joey
Ourprincessnicola
Living in invisible cities
lilyinthepink
westinthomas
zaneleland
Support Information
Contact a family - UK
Genetic Alliance
NHS Choices - UK
Family Voices - US
Genetic Alliance - USA
Other Organisations
Over The Wall - UK
Caudwell Children - Changing special childrens lives - UK
Torbay Holiday Helpers Network - UK
Feeding tube awareness foundation - USA
Manchester parent carers forum
Related syndrome support & Information
RASopathies Network
CFC International
The Neuro Foundation - UK
Neurofibromatosis, Inc - USA
The Noonan Syndrome Association - UK
Neurofibromatosis, Inc. California - USA
The Children's Tumor Foundation - USA
Syndrome information from the NCBI
Costello syndrome
CFC Syndrome
Noonan Syndrome
Neurofibromatosis type 1