We are saddened to hear of the death of Charlotte Raven today.


Charlotte has died at the age of 55 and had Huntington’s disease.

Charlotte Raven was a journalist who rose to fame in the 90s. She was a columnist, author and editor who wrote extensively for the Guardian and New Statesman.

She was the first patient in the UK on the Roche Gen-Peak trial of the huntingtin protein-lowering drug Tominersen. Reflecting on this, her memoir was called ‘Patient 1 – living with Huntington's’. This was an honest portrayal of her life and how she found out about Huntington’s being in her family and then learning she had inherited the disease.

Cath Stanley said:

Charlotte was a vocal advocate of Huntington’s disease I remember hearing her speak at the EHDN Conference in 2022; taking time to rest between speaking, it was a powerful speech. She knew then what her future held. We wish her family well and send them our thoughts at this time.

Charlotte Raven - September 1969 –  23 January 2025