Patient and Stakeholder Engagement

Gaining Strength: Webinar to Explore Advocates’ Role in Drug Development

DURHAM, N.C., August 10, 2016 — Patient advocacy groups play an important and growing role in developing drugs to treat cancer and rare diseases, contributing to study design, recruiting patients, and even directly funding clinical trials. At a September webinar, Premier Research will team with rare disease advocacy organization Global Genes to explore this important trend.

Juliet Moritz, Executive Director of Strategic Drug Development at Premier Research, and Susan Stein, MPH, Founder/CEO of Connexion Healthcare and a member of the Global Genes board of directors, will present The Powerful and Evolving Role of Patient Advocacy Groups in Clinical Research on Wednesday, September 14, at 11 a.m. EDT / 4 p.m. BST / 5 p.m. CEST. They’ll look at advocates’ prominent influence throughout the drug development process, from discovery through market entry, and at how recent and pending regulatory changes are reshaping the industry.

“Advocacy groups are just starting to realize their huge potential to help medical science take on needs that have long exceeded our reach,” Moritz said. “Their deep investment in the search for new therapies makes them vital participants in the development of today’s most promising treatments.”

More than 7,000 known rare diseases afflict one in 10 Americans, “but an estimated 95 percent of these conditions do not have a single FDA-approved drug treatment,” Stein said. “Global Genes is working to give this under-served community a unified voice, and we welcome the enthusiastic response we’re receiving from our industry partners.”

Watch today for an informative discussion about how advocates are helping patients get access to the most effective new treatments.

About Global Genes – Allies in Rare Disease

Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

About Premier Research

Premier Research is a leading clinical development service provider that helps highly innovative biotech and specialty pharma companies transform breakthrough ideas into reality. The company has a wealth of experience in the execution of global, regional and local clinical development programs with a special focus on addressing unmet needs in areas such as analgesia, CNS, oncology, pediatric and rare disease. Premier Research operates in 84 countries and employs 1,000 professionals, including a strong international network of clinical monitors and project managers, regulatory, data management, statistical, scientific, and medical experts. They are focused on smart study design for advanced medicines that allow life-changing treatments.