Joining the discussions on Rare Diseases in Europe!

We were very fortunate to be able to attend the 7th European Conference on Rare Diseases & Orphan Products in Berlin last weekend. The conference was a great opportunity for The Cure & Action for Tay-Sachs (CATS) Foundation to make contact with other patient organisations across Europe to discuss the work that is currently being undertaken in the rare disease world.

At the conference we were able to take part in various discussions covering the many challenges organisations like our charity have, including themes such as the role of patient registries and the protocol for starting clinical trials. We were also able to listen to some inspirational talks, including those by Lesley Greene from CLIMB on patient support, Nick Sireau from the AKU Society on empowering patient advocates in drug development and Kay Parkinson from Alstrom Syndrome UK on models to progress knowledge and research. These are all very interesting to us at The CATS Foundation and will help us drive the charity forward with new initiatives we plan to start in the near future.

In addition to the conference in Berlin, we were also invited to attend the Lysosomal Storage Disease Study Day in Birmingham on the 13 May. This study day was a fantastic opportunity for us to raise awareness of The CATS Foundation to the health care professionals in attendance and to listen to the very interesting challenges that they face in diagnosing and treating those affected by an LSD.

A few photos from each event can be found below and if you click on the images you will be taken to the albums of the events on Flickr.

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The BPNA Conference 2014

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