Advancing treatments for rare diseases Together

Sharon Terry

16Jun

EspeRare President’s TedMed talk in now online.

In this inspiring speech, Sharon Terry shares her personal story about how, since science didn’t understand her kids’ rare disease, she and her husband decided to study it themselves. Thus they paved the way for patient empowerment in research and drug development.

 

 

 

 

 

16Apr

The EspeRare foundation has been presented by Sharon Terry at the International Rare Diseases Research Consortium (IRDiRC) in Dublin, on April 16th.

About IRDiRC: The International Rare Diseases Research Consortium (IRDiRC) was initiated by the European Commission and the US National Institutes for Health Research and launched in April 2011 to foster international collaboration in the rare diseases field. IRDiRC will team up researchers and organizations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

View the programme

 View conference report