Rare diseases: research brings hope for patients

2nd International Congress on Research of Rare Diseases in Basel (5-8 March 2014)

Syringomyelia, Prader-Willi syndrome, glass bone disease – did you know that around 500,000 people in Switzerland suffer from a rare disease, a large number of whom are children? For most of these diseases, there is no prospect of a cure even today. All too often, there is simply not enough known about how the disease develops and the course it takes.

Conducting research into rare diseases is very difficult in many cases. How is it possible to build up a network of experts if there are only a handful of patients worldwide? How can the small number of patients who live in different language and time zones engage in networking and mutual support? What can the government and the public authorities do to help improve on the situation for researchers and patients?

These are the questions that the second International RE(ACT) Congress on Rare Diseases will be looking at. “The congress is aiming to network experts from all over the world in Basel”, say the organisers Pascale Vonmont (Gebert Rüf Stiftung) and Olivier Menzel (BLACKSWAN Foundation). “Leading experts from the universities and industry and also patient representatives will be sharing their experiences and discussing new therapeutic approaches. It is this configuration that makes the RE(ACT) Congress unique anywhere in the world. And, in the best case, we will be providing renewed impetus to research into rare diseases and giving the patients some hope.” All in all, more than 300 experts are expected in the Gehry Building on the Novartis Campus.

Highlights: opening event, Swiss Showcase

On 5 March, an opening event is being staged from 18.00 to 20.00. Jörg Reinhardt, Chairman of the Novartis Board of Directors will be providing insight into 50 years of research into rare diseases at Novartis; Yann Le Cam, CEO of the European patient organisation, Eurordis, will be presenting the challenges from the patient’s point of view, and Stephen Groft, Director of the “Office of Rare Disease Research” at the US National Institutes of Health (NIH) will be taking a look at current research efforts. Registration via the congress website is necessary for those wishing to attend the free opening event.

On 6 March (12.00-14.00) the Swiss Showcase is being held, highlighting Switzerland’s strong position in this area of research. Just like a window shopping spree with lunch laid on, visitors will be given an overview, in brief presentations, of nine selected projects conducted by Swiss research groups.

The congress programme is available for you here.