Over the summer Rare Diseases UK sent out a survey on patients’ and families’ experiences of rare diseases. They received a fantastic 600 responses and are in the process of completing a publication to outline the results of the survey. The publication: “Experiences of Rare Diseases: An insight from patients and families” is due to be launched in November.
To accompany the launch Rare Diseases UK are hoping to get media coverage to raise awareness of rare diseases and some of the issues patients and families face in areas such as:
– accessing a correct and timely diagnosis
– the availability of information about the condition
– accessing the range of support needed
– accessing treatment
– coordination of care
– the availability of information and the ability to participate in research
If you are interested in raising awareness of the need for a strategy for rare diseases and are willing for your story to appear or to be interviewed by the media, please could you download and complete the form linked here and return it to Rare Disease UK. This is really helpful as it means Rare Disease UK can move quickly if there is any interest from the media.
Rea and I participated in a similar initiative last year and Rea’s birdshot experience was published in a women’s magazine. We would encourage you to submit your story if you are able to and you never know you may be able to help us raise awareness about Birdshot Chorioretinopathy and contribute towards getting a quicker diagnosis and better treatment in the future for others.