Raising awareness of Dravet Syndrome
Galia Wilson and Claire Eldred have provided us with today's article in recognition of International Dravet Syndrome Awareness day, Wednesday 23rd June.
Our story of Norrie Disease
We welcome guest blogger Carla Golledge, who shares her story about son Cameron who was born with Norrie disease.
How Schinzel-Giedion Syndrome (SGS) has changed our lives
Nuala Summerfield tells the story of her daughter's diagnosis of rare disease Schinzel-Giedion Syndrome (SGS) and setting up The SGS Foundation
SCN8A – the needle in the haystack
As part of our Patient Advocacy and Engagement program, we welcome guest blogger Ben Clay, whose daughter Tilly was diagnosed with SCN8A when she was 8.
Redressing the balance: Ring Chromosome 20 Syndrome
Congenica welcomes Allison Watson to talk about her experiences of Ring Chromosome 20 (R(20) - an ultra-rare epilepsy syndrome.
Why my five-year-old daughter is my inspiration as we fight to understand her sister’s epilepsy
March 26 is #Purpleday, an international awareness day that aims to get people talking about epilepsy and raise awareness of the condition. Congenica welcomes guest blogger Adam Clatworthy to tell ...
Charles’ Story
Our daughter Imogen was born in 2012 at 30 weeks, and spent her first month in intensive care.
The complexity of epilepsy - an overview
My name is Charles, and I'm both a Genome Scientist and the Patient Advocacy & Engagement Lead at Congenica, Cambridge, UK
Why I believe in clinical genomics: A parent’s perspective
Why I believe in clinical genomics: A parent’s perspective