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Biogen (now Bioverativ), a leading biotechnology company, was developing medicines in a new therapeutic area, hemophilia, with the goal of making a valuable contribution to this tight-knit patient community.
Hemophilia, a rare bleeding disorder, is caused by nearly 4,500 DNA variants. The community had long discussed the benefits of providing genetic testing for people with hemophilia and their families to better understand the disorder, but funding and collaborative challenges had prevented them from doing so.
Brought together Biogen with leading influencers in the space including a leading patient advocacy group (the National Hemophilia Foundation), professional society (American Thrombosis and Hemostasis Network), and medical research institute (Bloodworks Northwest) to shape the solution.
Established My Life, Our Future (MLOF), a collaborative effort offering free genetic testing to people with hemophilia and their families in the U.S., and created the largest research repository of its kind.
- 100+ HEMOPHILIA TREATMENT CENTERS participated; 11K+ PEOPLE ENROLLED
- Positive news and social media coverage including FRONT-PAGE STORIES in leading advocacy pub; sessions at leading congresses
- 8K+ PARTICIPANTS contributed to research repository; 900 NOVEL MUTATIONS IDENTIFIED
- Surveys show the company’s corporate REPUTATION NOW EXCEEDS established companies in the space
- NOMINATED for 2018 Global PRWeek Awards HEALTHCARE CAMPAIGN OF THE YEAR and 2018 SABRE Awards BEST COMMUNITY PROGRAM
“Managing My Life, Our Future is no simple feat, yet KYNE seems to do it with ease. From balancing the needs of four multi-sector partners to developing strategic communications, their team consistently exceeds my expectations. KYNE’s support has been crucial to the success of this unique community initiative. They’re great!”