Connexion Healthcare proudly joined forces with MassBio, the National Organization for Rare Disorders (NORD), and 450 attendees for Massachusetts Rare Disease Day 2016 observations in the Great Hall at the Massachusetts State House in Boston on February 29.
Patients and their caregivers, advocates, physicians, Massachusetts state legislators and their staff members, representatives from numerous life sciences organizations, and the media gathered to raise the “Patient Voice,” a voice loudly becoming united around diagnosis and access issues, due in large part to awareness events across the country like this one. Chris Anselmo, a patient with Miyoshi myopathy, said, “Connecting with other rare disease patients at events like this is life changing…. We all feel the same emotions: isolation, loneliness, etc, but we’re all in this together. You are not alone.”
Connexion Healthcare attendees were Connor Galloway, VP and Head of the Rare Disease Center of Excellence. Connexion understands the complexity and need for the patient voice when bringing a product to market, and our attendance reinforced the techniques we use when developing strategies and delivering tactics for this marketplace. For a better understanding of how Connexion can help with your scientific messaging, please contact us.
PA Rare Disease Day March 16
Connexion Healthcare is once again an organizer and proud sponsor of Rare Disease Day in Pennsylvania. Join us at the NORD state capitol event in Harrisburg, PA, on Wednesday, March 16th for the Pennsylvania Rare Disease Day observation. To register, go here.
About the Connexion Healthcare Rare Disease Center of Excellence
Connexion Healthcare is a full-service global provider of strategic medical and scientific communications with decades of experience providing exceptional service to the pharmaceutical industry. We provide services through 2 Centers of Excellence—Oncology and Rare Disease—and possess core expertise in these therapeutic areas and their marketplaces.
The Connexion Healthcare Rare Disease Center of Excellence specializes in communicating the science behind rare diseases and orphan drugs. We strategically partner with industry leaders in the rare disease community to proactively connect all stakeholders in launching products to underserved patient populations. Our team comprises skilled communications experts who plan, develop, and disseminate scientific communications based on their advanced knowledge of the science, the patient journey, healthcare providers, and the orphan drug approval process.
At Connexion, our cross-functional teams navigate complicated treatment and market landscapes by elucidating the appropriate pathways to brand success. We understand how brand strategy drives market share. Since launching its dedicated Rare Disease Center of Excellence, Connexion has developed prelaunch, launch, and postlaunch communications in numerous rare diseases and disorders: congenital and genetic, movement, metabolic, and lysosomal storage disorders; lung, blood, skin, and endocrine diseases; and rare cancers.
For further information regarding the Rare Disease Center of Excellence at Connexion Healthcare and how we can develop rare disease communications to differentiate therapies by their unique attributes, contact:
Susan Stein, MPH
SVP, Strategic Services and Business Development