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BioPontis Alliance for Rare Diseases Establishes Circle of PatronsToday there is good news for people and families who are afflicted with a rare disease. BioPontis Alliance for Rare Diseases is changing the face of how new treatments for rare diseases will be developed and supported. The non-profit is announcing its Circle of Patrons, with an inaugural philanthropic gift by Shire plc (LSE: SHP, NASDAQ: SHPG), a company focused on enabling people with life-altering conditions to lead better lives. Today more than 95 percent of the up to 8,000 rare diseases worldwide are without treatment, leaving approximately 300 million people worldwide in need. BioPontis Alliance endeavors to bridge the gap from promising science to real-life medicines. "Despite the progress in our understanding of genetics and human biology over the last 25 years, we still have so much work to do," said Erik Tambuyzer, Chair of the Board of BioPontis Alliance. "Basic research alone won't address the gap. A new approach to the first steps in advancing discovery science toward medicines is critically needed. BioPontis is connecting patients, philanthropic support and biopharmaceutical product development to improve early study design, which offers the potential for ultimately better patient outcomes." BioPontis Alliance is founded by seasoned professionals: academic researchers, development scientists, regulatory leaders, business executives and rare disease clinical experts. The alliance's collective experience drives its founding basic principle of patient integration into early, pre-clinical study. "Our independentsystem is unique. So many times companies get to human studies and identify a disconnect between their science and the real-life patient need," says Susan Hayflick, MD, BioPontis Board member and medical geneticist, "Our role is to connect the dots before this happens to ensure patient needs are brought onboard early and in an integrated fashion. We believe this important step could ultimately reduce the time it takes to get new medicines to market." "Shire believes in the power of collaboration," says Philip J. Vickers, Ph.D., Head of Research and Development, Shire. "In addition to our robust in-house research and development efforts, we partner and collaborate with charitable foundations-like the BioPontis Alliance-academic institutions and other research organizations with the aim of bringing forward impactful therapies for patients who suffer from rare diseases." Early funding for the alliance is expected to come from a diversified base with Foundations and individual donors alongside the Circle of Patrons. BioPontis invites all corporations active in healthcare services or products, to join the Circle of Patrons to help develop life altering treatments. BioPontis offers this social responsibility initiative not just to biopharma companies, but also to health insurance carriers, CROs, health information companies and other profit centers in healthcare. About BioPontis Alliance for Rare Diseases BioPontis Alliance for Rare Diseases is a 501c(3) public charity in the US (North Carolina) and a foundation of public utility in Belgium (Brussels). Managed by an international Board and executive team, BioPontis partners with patients' organizations and clinical researchers to bridge the gap, from promising science to medicines. BioPontis Alliance for Rare Diseases is being established as a global non-profit, inviting corporate, private and foundation philanthropic support. Contributions to support our programs and mission can be made at http://biopontisalliance.org. Source (News - Alert) for estimates of rare disease prevalence: http://www.ncbi.nlm.nih.gov/books/NBK56194/ View source version on businesswire.com: http://www.businesswire.com/news/home/20151012005609/en/ |
