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BDFA raising public awareness of Batten Disease

Rare Diseases Day was co-ordinated by the European patient group, Eurordis, and events took place throughout the EU to help raise awareness of rare diseases to policy makers, health professionals and the wider public.  The issue of rare diseases is a hot topic currently at EU level and many member states are also beginning to put into place national Rare Disease Plans.  So the time is right to be raising our voices about rare conditions at a national level too.  Also, in late 2007 the EU commission produced a Communication document called "Rare Diseases: Europe's Challenges".  A communication document is produced to give guidance and information to help member states formulate and implement coordinated objectives and strategies in particular areas where the issue has been devolved to member states, such as health.  As health is a national issue the EU commission can't produce a regulation or a directive (like the UK parliament Acts) but can give guidance and information.   This new Communication on Rare Diseases will shape the future strategy of Community action in the field of rare diseases.  As well as all this, activity patient groups are now working together more than ever across Europe and organising a pan-European activity such as this will generate publicity collectively for patients with rare conditions.

Linking this to what we want to achieve for Batten Disease in the UK as detailed in our Mission Statement, this was very timely for us as the Batten Disease Family Association are pursuing becoming that National Voice for Batten’s as well as being active in ensuring better services are available in the UK and linking into Europe for finding best practices and consolidating information both clinical and research.  Therefore Julie Pickering, Chair of the BDFA, and several other BDFA Trustees and professional liaison links, attended a reception at the House of Commons in February. The reception was organised by GIG and co-incided with the 1^st national rare diseases day in the UK. We were able to raise the profile of Batten disease to some MPs and Lords as well as meet other rare disease organisations.  

Please continue to help us strengthen our national voice for Batten’s by registering today as a member of  the BDFA and renewing your membership when due and letting other families and professionals know about our national network which they can join and get involved in whatever way suits them.   Every voice counts in the rare disease battle arena.   Together we can make a difference.