Many of us with Birdshot will have experienced the difficulties of getting hold of medication that controls our Birdshot, if we don’t respond to the ‘usual’ medication regime of steroids and mycophenolate mofetil. For many of us, we have had to get our consultants and GPs to apply to the relevant health agency (usually the Primary Care Trust that covers our area) for a ‘special circumstances hearing’. Often, this takes months, only to be told, at the end of the process, that the PCT will not approve the medication regime we have applied for.
Well, help is at hand! Not only is a ‘rare disease strategy’ being implemented across the UK in 2013, but also, the Genetic Alliance UK is currently looking at how we, with rare diseases, should get access to medications (none of which have been specifically licensed for our disease) and who should decide whether they are safe or not.
You can help.
The Genetic Alliance UK is now launching a recruitment campaign for an innovative and exciting research project about new medicines.
They want your views and your participation – It’s all about getting your views heard. Below, we include a few more details about the project and how you can get involved.
Anyone interested in participating should visit the Genetic Alliance website for full information but here is a short summary:
New medicines: How should we weigh the risks and benefits? And who should do so?
Genetic Alliance are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!
There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.
The aim is to generate as much awareness and interest in the project as possible! To find out more please contact Project Officer, Amy Simpson (firstname.lastname@example.org) or Marketing Officer, Julian Walker (Julian@geneticalliance.org.uk).
Rea and Annie