What are your Birdshot priorities?

Last year many of you very kindly completed the Sight Loss and Vision Priority Setting Partnership survey and following this we have now received a short list of a number of “uncertainties” to consider.   We want to know which 10 “uncertainties”  are most important to you.  Please see below, ( or – Inflammatory FORM A_James Lind Alliance Sight Loss and Vision Priority Setting Partnership).  This is your chance to influence the direction taken by eye researchers on our behalf. Continue reading

What Is Your Experience of Having Birdshot?

A major survey is being undertaken across the UK and US into the experiences of people like us with Rare Diseases.  The findings of the research will guide future research and education, so if you can spare 10 minutes to complete the survey, please click on the link below or copy and paste it – once on the site, you will see the link for the survey: Continue reading

Sirolimus

Some of you may know that there have been trials on the drug, Sirolimus, which is given intravitreally or subconjunctivally (i.e. into the eye).

The idea behind this medication is that it should allow us to decrease our use of steroids which have such horrible side-effects, and it tends not to give so many other side effects, and it is not taken systemically (i.e. into our bodies). Continue reading