News

We had the pleasure of attending the Westminster Reception to celebrate Rare Disease Day. The annual receptions are hosted at the House of Commons in London, the Senedd in Cardiff, and the Scottish…

Linda D'Antona attended this year's Intracranial Hypotension Symposium at Cedars Sinai Hospital, Los Angeles.

The CSF Leak Association was delighted to be invited back to endorse and attend the 2019 Headache Academy at the Royal College of Physicians in London. It was the second specialist teaching weekend on headache disorders organised by Dr Matharu. The foremost headache experts in the country were invited to speak and give case presentations.

The CSF Leak Association was delighted to be invited to endorse and attend the first Headache Academy, a teaching weekend on headache disorders which was held on the 13^th-14^th October 2018 at the Royal College of Physicians in London.

It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. RAREfest is a first-of-its kind rare disease inspired festival conceived and brought to you…

Scotland’s largest motorcycle fundraiser to support the CSF Leak Association took place between 26th-28th May and included a full day tour of the Isle of Skye. Starting at the historic ground of…

Our first UK based awareness week ran from the 26^th February – 4th March 2018, and what a week it was!

By Deborah Ogg I was very excited to attend the Scottish Parliamentary Reception for Rare Disease Day. The reception was organised by Rare Disease UK / Genetic Alliance UK and the Scottish…

Our special thanks go to Scottish Canals for supporting this year’s Leak Week UK by lighting up the wonderful Kelpies for CSF Leak Awareness. Thank also to everyone one braved the plummeting…

The first Intracranial Hypotension Symposium was held on October 14, 2017. Hosted by Cedars-Sinai Medical Center in partnership with Spinal CSF Leak Foundation.

Cerian Baldwin, a Trustee of the CSF Leak Association, was able to attend the symposium. Here she shares her experience of the day.