Rare Disease Community Comes Together to Raise Awareness in Trenton

By Jim Pytell, Assistant Editor On Mar 6, 2018

The New Jersey Rare Disease Alliance (NJRDA) held its annual Rare Disease Day commemoration yesterday at the New Jersey State Museum in Trenton. The event was co-sponsored by the National Organization for Rare Diseases (NORD), the HealthCare Institute of New Jersey (HINJ) and BioNJ.

According to NORD, a disease is defined as rare when it affects less than 200,000 people at any given time. As such, there are more than 7,000 distinct types of rare diseases, which affect more than 350 million people worldwide – or 1 in 10 individuals. This includes nearly 800,000 patients in New Jersey.

The event, entitled “A Better World for People Living with Rare Diseases: State, National and Global Action,” featured Congressman Leonard Lance, co-chair of the Rare Disease Caucus of the United States Congress, as its keynote speaker.

“I am always encouraged by the strength and resolve of the rare disease community,” said Lance, who also pointed out that lawmakers in Trenton have begun to work on solutions to improve accessibility to new treatments and therapies for rare disease patients.

“I am very proud of the work being done [in New Jersey] to ensure that our cause will be successful,” Lance continued. “Keep up your fine advocacy, and as you advocate here in Trenton, please know that you also have support in the Congress of the United States. … The voices of rare disease are always heard. Your stories always matter.”

Attendees were also treated to two inspiring panel discussions made up of industry professionals, rare disease patients and advocates alike, who shared their personal stories, advice on how to effectively advocate to the Legislature in order to generate positive change, and insight into the clinical development being done to combat rare diseases.

“This is an important event for the rare disease community to connect, learn and share,” said Ellynn Szoke, co-founder of NJRDA. “This year’s panels have participants from across the rare disease continuum and offer a wonderful opportunity to understand the challenges and successes in both clinical development and the legislative process. It is important for both patients and advocates to understand how their voices can be integrated into both.”

Additionally, New Jersey Assemblyman Daniel R. Benson stopped by and presented the official legislative proclamation, observing February 28 as Rare Disease Day in New Jersey.

At the conclusion of the discussions at the State Museum, advocates walked to the State House and engaged with legislators and staff about various issues of concern to the rare disease community.

“We look forward to continuing to work together to strengthen the impact of the rare disease community in New Jersey,” Szoke said. “Together we are stronger than any of us are alone.”

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