The Importance of Patients in Research of Rare Diseases

It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

The presentation can be accessed at:

http://www.eurordis.org/sites/default/files/publications/3_FBignami_RDD2010.pdf

We would like our first  Birdshot Patient Day to be the start of increased awareness about birdshot,  better diagnosis of the disease and increased research into better and less toxic treatments.  The Day will be a true partnership between patients, healthcare professionals and researchers, and it is our opportunity to begin to influence the research agenda into Birdshot.

Annie and Rea

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