Connexion Healthcare is once again a proud cosponsor of Rare Disease Day‒Pennsylvania and is helping to lead the charge in raising disease awareness.
The slogan for Rare Disease Day 2016 is “Join us in making the voice of rare diseases heard.” More than 7,000 diseases are rare, and 10% of the US population has a rare disease―totaling 30 million Americans. Even so, people living with a rare disease are often isolated.
This year, as for the last 8 years, around the last day of February (the official “Rare Disease Day”) and into March, hundreds of patient organizations will join in hundreds of events in the United States and more than 80 other countries. The goal is the same: To build awareness about rare diseases and their impact on patients and families.
The theme for Rare Disease Day 2016 is “Patient Voice.” Because of the rarity of many different conditions, patients with these diseases play a crucial role in initiating change to improve their lives and in voicing their needs. Rare Disease Day events amplify the collective voice of patients with rare diseases so that it is heard all over the world. Patients with rare diseases are experts in their diseases, and so their Patient Voice is vital.
Raise your voice at the State Capitol in Harrisburg, Pennsylvania on March 16, 2016. Join the National Organization for Rare Disorders (NORD), patient advocates, legislators, and the Connexion Team to increase awareness about rare diseases. Check us out on Facebook, too, because the Connexion Healthcare Rare Disease Center of Excellence will hold its own internal celebration, “Dare To Be Rare,” on February 29, 2016.
The political momentum resulting from past Rare Disease Day events has contributed to the advancement of national plans and policies for rare diseases worldwide. You can make a difference by continuing to raise the awareness of policymakers, public authorities, researchers, medical professionals, and industry representatives.
Or, raise your voice in the Great Hall of the State House in Boston, Massachusetts, on February 29, 2016. Find out about the research being done in Massachusetts to treat and cure rare diseases. A special Rare Disease Day Forum will be held there on that day at 9 AM entitled “The Patient Journey in Rare Disease Research and Development.”
Time, Location, and Registration Information for Rare Disease Day 2016 Events
Pennsylvania State Capitol Building
North 3rd Street | Harrisburg, PA 17120
Date: Wednesday | March 16, 2016 | 10:30 AM to 1:00 PM (EST)
Register: PA Rare Disease Day 2016
Massachusetts State House
Great Hall | 24 Beacon Street | Boston, MA 01233
Date: Monday | February 29, 2016 |11:00 AM to 12:00 PM (EST)
Register: MA Rare Disease Day 2016
Last year, the reach of social media for Rare Disease Day 2015 grew significantly. The Facebook page reached more than 7 million users; Twitter reached nearly 13,000 followers; and Thunderclap reached more than 1.2 million users.
Links for more information
NORD Web site: http://rarediseases.org/
Other Rare Disease Day Events Across the US (NORD): http://www.rarediseaseday.org/country/us/united-states
Connexion Web site for Facts About Rare Disease:
Rare Infographic: http://connexionhealthcare.com/downloads/
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