Rare People – The Research Charity brings hope to those affected by rare genetic neurodevelopmental conditions — illnesses so uncommon that most are told there’s no chance of a treatment. The first of many studies we will fund, is looking at a potential treatment for DeSanto-Shinawi Syndrome

One of the Poet's Families daughters, Frankie, was born with a very rare neurodevelopmental condition called DeSanto-Shinobi syndrome. Until very recently, there no treatment beyond supportive care.

But that is beginning to change.

New advances in artificial intelligence now mean that we can search for existing, safe, licensed drugs that might be repurposed to target the specific genetic pathways involved - not just for Frankie’s condition, but for many rare conditions like hers.

We are raising money to fund this research (which isn't profitable for drug companies as so few children have each of the conditions) so that families like ours are not simply told to wait and see, but are offered real, evidence-based hope.