June 15, 2016

Dystonia Europe at the First BioPontis Alliance Patient Integration Workshop in Europe

This week, BioPontis Allicance held its first Patient Integration workshop in Europe, at the Bio Incubator in Leuven, Belgium. Dystonia Europe Executive Director Monika Benson participated together with representatives of about 10 other patient organizations.
BioPontis Alliance is launching a series of Patient Integration Workshops in the US and in Europe. This workshop series has the objective of identifying protocols that BioPontis will adopt to directly integrate patients into the first stages (pre-clinical trial phases) of rare disease therapeutics development. The first pilot program conducted in April 2016 in Washington DC confirmed that early patient involvement will indeed greatly impact BioPontis’ development work, while also offering new solutions for industry at later development stages.
BioPontis Alliance for Rare Diseases is comprised of a community of experts from the various
fields critical to creating treatments for rare neurological diseases; academic scientists,
biopharmaceutical leaders, drug development scientists, and patients. BPA is a non-profit
organization in the US and in Europe and collaborates to bridge the gap between hope and
treatments. Without this unique structure and the capabilities each member brings to the
Alliance, the chances of finding treatments for rare neurological diseases remain
discouragingly small. The Alliance doesn’t just promise hope for treatments; with its expert
knowledge, it promises action.
BioPontis’ first partnership is the CMT Therapeutic Alliance, which is dedicated to finding
treatments for the various types of Charcot-Marie-Tooth Disease. 

The vision of BioPontis Alliance for Rare Diseases is to build a bridge between the known causes of rare neurological diseases and potential drug candidates that could change the lives of the millions of people who live with these diseases around the world. For more information on BioPontis see http://biopontisalliance.org