BUS recently received the following request from Genetic Alliance for a rare disease awareness campaign that they are running. We are posting this letter in case any of our UK based members would like to tell their story to publicise Birdshot Uveitis and help raise the profile. Please contact BUS if you would like to be put in touch with Juliet if you would like to have the chance to tell your story.
I’m contacting you about a campaign to raise awareness of rare diseases which I was hoping you might be able to help with by supplying me with some information about any of your members who would be happy for their story to appear in the press. Hopefully, it will be a process which would help also to raise the profile of the disease your charity works in.
We are trying to encourage people to look at a website which has been created to help raise awareness – www.raiseyourhand.co.uk – 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 we attract 2,000 people to the Raise Your Hands website. If charities have a high profile patron or trustee we would also love to include them in the media work for the campaign. The press could be in national newspapers, women’s press or local newspapers and would be a chance to get a greater understanding of the disease your charity represents.
With regards to the member stories, the member wouldn’t be able to mention any specific medication or treatment and we’d rather not include members who are trying for funding of a specific drug. Once I had their details I would give them a phone call and write up their story for them to approve before sending it to the media.