BUS believes that it is important to raise the profile of uveitis in general, and Birdshot Chorioretinopathy in particular so that it is better researched and understood.
To do this, we have been working hard at gaining a voice on local and national lobbying groups, working groups and parliamentary groups.
Vision 2020 UK
We have joined UIG to Vision 2020 UK. The objectives of Vision 2020 UK are:
- To prevent avoidable blindness
- To improve the quality of services to vision impaired people
- To improve the training available to professionals providing advice and services
- To improve communication between organisations within the VI Sector
- To improve the availability of information to vision impaired people
- To ensure that the voices of the vision impaired are heard when planning services and their opinions sought on key issues affecting their lives
- To raise public awareness of the issues and problems relating to sight loss
In addition to the above, VISION 2020 UK seeks to provide a unified response on key issues affecting people whose vision is impaired.
UK Vision Strategy
The UK Vision Strategy is a VISION 2020 UK initiative led by RNIB to develop a unified plan for action on all issues relating to vision, across the four countries of the UK.
Rare Disease UK
We have also joined UIG to the Rare Disease UK coalition. This coalition has been asked to develop a Rare Disease Strategy for implementation in the UK in 2013. Rea sits on one of the working groups helping to develop this strategy. The important thing for us is, that once implemented, all of us who have rare diseases should see a distinct improvement in the care we receive and the access we have to different kinds of medication. The Rare Disease UK coalition is a member of EURODIS, the European organisaton for Rare Diseases, so UIG is now represented on EURODIS too.
All Party Parliamentary Groups
Rea also attends the All Party Parliamentary Group on Eye Health and Visual Impairment, which is currently chaired by Sandra Gidley MP. She will also be attending the newly formed All Party Parliamentary Group on Rare Diseases.
We have joined UIG to Orphanet
and have posted details of UIG and uveitis on their website.
We Need Your Help
If anyone can think of other ways of raising the profile of uveitis and Birdshot Chorioretinopathy, or wants specific ideas fed into any of these fora, please let us know by e mailing us at Birdshot@live.co.uk.
Annie and Rea