raiseyourhand.co.uk – is a website which has been created to help raise awareness of a year-long campaign being run called Challenge the Unchallengeable, which aims to increase understanding in the UK of rare diseases and their impact on patients’ lives.
The campaign aims to increase awareness that as many as one in 2,000 people are affected by a rare disease, many of which are relatively unknown to the general public and in some cases, even to healthcare professionals, yet they have a devastating impact on patients and families.
The idea is that by running stories in the press on people who have a rare disease, tied into the story of the campaign, that they attract people to the Raise Your Hand website.
Juliet contacted me, asking for stories to present to the media. If you’d like to share your story to help this campaign, please contact Julia by emailing firstname.lastname@example.org or calling 01273 208356/0778 465 2520. She’ll need to chat to you for about 20 minutes to find out a bit about yourself and your story and write it up.
With regards to your story, it mustn't mention any specific medication or treatment and they’d rather not include people who are trying for funding of a specific drug.