News

The charity’s Annual General Meeting (AGM) will take place at 7pm on 19 November 2020. All of our members are eligible to attend. Members may join the meeting as a tele-/videoconference using Skype…

A huge thank you to everyone who completed our recent Covid-19 impact survey. Every single response is valuable and will contribute to the call for much needed improvements to the quality of care for…

This is the second in the series of write-ups from this Conference. This edition is from Dr. Amar A Chotai, an Interventional Neuroradiology Fellow At the Royal Victoria Infirmary, Newcastle-upon-Tyne.

Claire Secker

Spotlight on a Trustee

The Medical Accommodations Card helps others to understand your condition.

Claire Secker is preparing to run the 2020 London Marathon (now rescheduled to 4th October due to the coronavirus pandemic) to raise funds for our charity. To date, she has already been sponsored to the tune of £1,500.

This page will be kept under review and amended if/when government or expert guidance is updated.

Last updated: 24 March 2020.

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.