Advancing treatments for rare diseases together

July 2016

27Jul

Duchenne Parent Project Spain has been instrumental for the set-up of the Spanish clinical activities that focuses on testing Rimeporide in patients affected by Duchenne Muscular Dystrophy. Over the last few months, Dr Marisol Montolio Del Olmo helped EspeRare make the link with Dr. Jordi Díaz Manera from the Santa Creu i Sant Pau Hospital in Barcelona who will lead the first safety study of Rimeporide in 6 to 14 years old boys affected by Duchenne in Spain. In addition, DPP Spain is also providing administrative and funding supports for the travel and accommodation of patients and families who will be participating in this clinical trial.

Florence Porte Thomé, R&D Director of EspeRare said “Without the intervention of DPP Spain, it may not have been possible for EspeRare to open a clinical site in Spain. This partnership is a prime example of the power and importance of collaborating with patients organization to develop treatments for Duchenne Muscular Dystrophy.”

The study is now opened to recruitment in four clinical centers in Europe, the Santa Creu i Sant Pau Hospital (Barcelona, Spain), Armand Trousseau Hospital/ I-motion (Paris, France) and the San Raffaele Hospital (Milan, Italy) and soon in the Great Ormond Street Hospital (London, UK). “

For more information please visit: 

-> www.clinicaltrials.gov 

-> DPP Spain news release

 

29Jun

The foundation's co-founders participated to the 6th edition of the Swisstainability Forum to debate on new business models to foster economic and social sustainability of Switzerland.

The G21 was held the 28-29 June 2016 at the SwissTech Convention Center, EPFL, Lausanne.

This annual event is meant to be the platform for the economic transition in Switzerland. Its aim is to encourage meetings and collaboration between scientific, economic, and political actors and NGOs, to support the companies in their innovating and sustainable projects, and to showcase the best initiatives and innovations which will be the leading projects of tomorrow, always in a forward-looking spirit.

For more -> link