Links to sites who deal with rare and unknown syndromes:
http://childgrowthfoundation.org/
http://www.magicfoundation.org/www
http://www.easyfundraising.org.uk/
https://www.facebook.com/IsabellasBigDreams
http://www.rarechromo.co.uk/html/home.asp
http://undiagnosed.org.uk/