March 10,2019 – Ben’s Friends, our network of patient communities and Rare Disease Review, a medical and health policy journal hosted a miniconference at Hart House, Toronto. The Conference featured a variety of esteemed speakers, all joined together and shared on their expertise and experience in their individual fields. Ben Munoz, co-founder of Ben’s Friends joined the conference and talked about the challenges of having a rare condition and the importance of peer to peer support when dealing with a rare condition.
BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities to a new online platform. BioBlast is a clinical-stage global pharmaceutical company focused on the research and development of treatments for people living with rare diseases.
“We are focused on improving the lives of people suffering with symptoms of rare genetic diseases, like OPMD and SCA3,” stated Paul Firuta, Chief Commercial Officer, BioBlast, “and are excited about the opportunity to support Ben’s Friends in creating a new online homes for the OPMD and SCA3 communities.”
Ben’s Friends is hoping to complete the migration of the OPMD and SCA3 communities early 2016.