Advancing treatments for rare diseases together

Sharon Terry

24Sep

Sharon Terry – the first woman who became the Chair of the Board on Health Sciences Policy at the NASEM

Sharon Terry, Esperare

The National Academies of Science, Engineering, and Medicine (USA) appointed Sharon Terry, EspeRare’s President and CEO of Genetic Alliance, to lead the Board on Health Sciences Policy. In her new role, Sharon will share her vast experience and guidance on promoting health education and strenghtening research and biomedical sciences at large. 

Her expert advice on some of the most pressing challenges such as increasing public awareness on ethical, legal, and policy-related issues in genetics will add incremental value to the overall work of the Health and Medicine Division at the National Academies of Science, Engineering, and Medicine and healthcare system as such.

As a SHG 2021 Advocacy Award winner, she is the well-chosen nominee to face the goals laid in front of the Board.

For more information about the Board on Health Sciences Policy follow this link.

16Jun

EspeRare’s president, Sharon Terry, gave a TedMed talk on patients empowerment

Sharon Terry, TedMed, video, patients empowerment, EspeRare's president

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

EspeRare was presented at the IRDiRC

Foundation, Esperare, Sharon Terry, IRDiRC

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