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Things People with Rare Diseases Wish others Understood

How often do individuals with rare condition hear these words?

 

It must 'ring a bell' with so many people affected by rare conditions. Gorlin Syndrome is no exception and we are sure the statements included in the article will be familiar to all affected by rare conditions. Thank you to Genetic Alliance Uk for sharing this article. 


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
 
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