Search by condition

Through our various exhibitions relating to rare disease we have had the pleasure of meeting hundreds of people. In turn, we have seen hundreds of conditions. As part of our RAREresources, we aim to aim to share the raw experience of life with rare conditions.

Please click on a condition to be taken to the story about the person with that rare disease.

Angelman Syndrome  

Aniridia 

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)

Hurlers syndrome (mps1) 

Hydrocephalus   

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