A Patient Group Crafts Guidelines for Working with Pharma

Patient organizations have long been working with biopharmaceutical companies, but as they have grown more sophisticated about their interactions, they are coming to understand the value in laying out the ground rules for these relationships. Last year, the International Fibrodysplasia Ossificans Progressiva Association, or IFOPA, took the unusual step to craft a set of guidelines for the organization regarding how it engages with the pharmaceutical industry. It made these guidelines public and continues to refine them. We spoke to Betsy Bogard, chair of the IFOPA research committee, about why the organization created the guidelines, how they have affected interactions between the organization and industry, and how other organizations are interested in following suit.