The 2012 BIO International Convention provided an important opportunity for patient advocacy organizations like Global Genes Project, Tay Sachs and Allied Diseases, EveryLife Foundation, A1 Foundation, NORD and others to become more involved in the discussions happening within industry around the science and funding of rare disease research.
Centric Health Resources worked with BIO to help develop a rare disease track that was compelling and very well attended. “We are at a pivotal place in rare disease history where all stakeholders are beginning to become aligned and focused – Pharma, Biotech, Science & Academia, Investment Banking, Patient Advocacy and Policy Makers,” said Nicole Boice, President, Global Genes | R.A.R.E. Project. “We have started seeing successes on the investment and drug development side, policies are being implemented that will continue to provide incentive industry to develop rare disease drugs/therapies, and legislation is working to help accelerate these life saving treatments to get them to our patient community much more quickly,” Nicole Boice. We are hopeful. And organizations like BIO who are committed to helping advance efforts for rare disease patients are our hero’s.
About 15,000 people attended this year’s BIO International Convention, with Rare Disease research organizations being well represented; Amicus Therapeutics, BIO, Genzyme, Pfizer and Shire to name a few.