Latest News and Blogs

Nuala Summerfield tells the story of her daughter's diagnosis of rare disease Schinzel-Giedion Syndrome (SGS) and setting up The SGS Foundation

Congenica's Dr Charles Steward joins the “friends” of the UK infantile Spasms Trust as an advocate and advisor

A father's story of having a son with a disease so rare that he is only one of 38 kids in the world to be diagnosed with Champ1, and what it means.

Congenica’s Patient Advocacy and Engagement lead, Dr Charles Steward, has joined the International Cerebral Palsy Genome Consortium Governance Council.

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.

Congenica welcomes Allison Watson to talk about her experiences of Ring Chromosome 20 (R(20) - an ultra-rare epilepsy syndrome.

Article by: Alastair Kent OBE FRSA, Chair of the Congenica Patient Advocacy Advisory Board and former Executive Director of Genetic Alliance UK.

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 ...

The main objective of Rare Disease Day is to raise awareness amongst the public & decision-makers about rare diseases and their impact on patients' lives.

Maybe you are an aunt or uncle of a child or may have friends who have children. Whatever the relationship you have, children are life-changing.

Our daughter Imogen was born in 2012 at 30 weeks, and spent her first month in intensive care.

My name is Charles, and I'm both a Genome Scientist and the Patient Advocacy & Engagement Lead at Congenica, Cambridge, UK