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Guest Post: People with rare diseases need results from all trials

7th April 2014

By Rob Pleticha is the Online Community Manager of RareConnect.org, a EURORDIS project

This is a personal opinion 

The International Rare Diseases Research Consortium plan to have 200 new rare diseases therapies by year 2020. In Europe a disease or disorder is defined as rare when it affects fewer than 1 in 2000 citizens.(1) Researchers studying rare diseases have difficulty gathering a sufficient number of people to join clinical trials in order to reach statistically significant results that can impact treatment. Clinical trial transparency and sharing of clinical trial data is fundamental in advancing rare disease research.

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