Rare Disease Day at Janssen Pharmaceuticals

By Jennifer Devine

SmithSolve Celebrates Rare Disease Day at Janssen Pharmaceuticals

To celebrate, and show our support, of Rare Disease Day (RDD) 2016, sponsored by Rare New Jersey, representatives from SmithSolve attended an event hosted at Janssen Pharmaceuticals in Raritan, NJ.

IMG_7288Patients, advocates and pharmaceutical industry professionals joined together to discuss taking an active role in affecting change in New Jersey. This year’s RDD theme is patient voice, therefore making the goal of this event to empower and connect the voices in the rare disease community.

Among the keynote speakers who delivered informative, and moving, presentations were:

  • New Jersey Congressman Leonard Lance, who provided key highlights on the status of the 21st Century Cures Act, discussed ways to become involved in the rare disease community, and provided an overview of planned activities that will take place during Rare Disease Week on Capitol Hill.
  • Swati Sathe, MD, neurologist and associate professor, Department of Neurology & Neurosciences, Rutgers-New Jersey Medical School, who explained the critical role that patient advocates have in educating doctors, who know the science, but do not live with these rare diseases 24/7.
  • Finally, two speakers—one, a rare disease patient, the other,a parent caring for a child with a rare disease—shared deeply personal, poignant perspectives about their battles with debilitating conditions

As Jeff Leider, member of Rare NJ, said “in order to move mountains, we need an army.” As RDD 2016 approaches, it reminds us all of the importance of patient advocacy, that rare is beautiful and together we can make a difference.