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Giving people affected by rare conditions a platform to amplify their voice is a core aim of CRDN

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 jo@camraredisease.org if you’d like to share yours.  

Reuben Pharma Focus article

Reuben

Rare, undiagnosed condition

June 2021

Tristan's story

Tristan

Russel Silver Syndrome

February 2021

Eilidh from CRDNs Unique feet group

Eilidh 

KAT6A Syndrome

February 2021

Eleanor

Eleanor

Sotos Syndrome

February 2021

Olivia

Olivia

CDK13-related Developmental Disorder

February 2021

Bethan

Bethan 

Young carer – sibling

February 2021

Ellamae

Ellamae

Rare chromosome disorder

February 2021

Olivia Grace

Olivia Grace

Phelan-McDermid Syndrome

February 2021

Lily & Willow

Lily & Willow

Leigh’s Disease & Mitochondrial Complex 1 Deficiency

February 2021

Charlotte

Charlotte

Coffin Siris Syndrome

February 2021