83 / 100

Giving people affected by rare conditions a platform to be visible, vocal and heard

Thank you for raising awareness about your rare condition, sharing your talents and what you love in life and some of the challenges you face too. Browse this collection of stories and contact CRDN if you’d like to share yours. 

Phoebe

Acute Flaccid Myelitis (AFM)

Phoebe Unique Feet Patient Stories

Isla

Freeman Sheldon Syndrome (FSS)

Eilidh from CRDNs Unique feet group

Reuben

Rare, undiagnosed 

Reuben Unique Feet Undiagnosed

Tristan

Russel Silver Syndrome

Tristan Russell Silver Syndrome

Eilidh 

KAT6A Syndrome

Eilidh from CRDNs Unique feet group

Eleanor

Sotos Syndrome

Eleanor

Olivia

CDK13-related Developmental Disorder

Olivia

Bethan 

Young carer – sibling

Bethan

Ellamae

Rare chromosome disorder

Ellamae

Olivia Grace

Phelan-McDermid Syndrome

Olivia Unique Feet Phelan McDermott Syndrome

Lily & Willow

Leigh’s Disease & Mitochondrial Complex 1 Deficiency

Lily and Willow Unique Feet Leighs Mitochondrial Disease

Charlotte

Coffin Siris Syndrome

Unique Feet Charlotte Coffin Siris Syndrome crop
X
X
X