The purpose of the Rare Project is to highlight the people behind the rare conditions and to raise greater awareness of the impact that they have on the individuals and their community.  To date we have included the following conditions and the list is continually growing.  Please click on a condition to be taken to the story about the person with that rare disease.

Angelman Syndrome  


Coffin Lowry Syndrome  

Cornelia de Lange Syndrome

Crouzon Syndrome

Down syndrome (identical twins) 

Dravet syndrome   

Ehlers Danlos syndrome type 3   

Glutaric Aciduria Type 1  (Holly)

Glutaric Aciduria Type 1 (Alex)

HSV encephalitis  

Hurlers syndrome (mps1) 


idiopathic intracranial hypertension  

Leigh’s disease 

Marfan Syndrome

Moebius syndrome

Patau Syndrome  

Periodic Hypothermia  

Periventricular leukomalacia   

Phelan-McDermid Syndrome (PMS)    

Porencephalic Cyst

Prader Willi syndrome  

Sacral Agenesis (SA) 

Spina Bifida Myelomeningocele   

Wagr syndrome

West’s Syndrome    

X-linked Periventricular Nodule Heterotopia

This is an on-going project.  If you would like to be considered for taking part in the Rare Project please contact us using the form below.

Name *