A team from the Patient Experience Project had the privilege of attending the 2016 Rare Diseases & Orphan Products Breakthrough Summit presented by the National Organization for Rare Disorders (NORD).
This 2-day conference was held in Arlington, Virginia, just minutes away from our nation’s capital. Historic landmarks like the Washington Monument and the Capitol building were visible from the plane as we landed at Ronald Reagan Washington Airport. Just weeks away from the presidential election, it was hard to drown out the cacophony of the campaign news on the television monitors or ignore the election buttons and T-shirts that lined our walk through the airport terminal.
In this unavoidable, seemingly never-ending atmosphere of polarized presidential politics, I had an unexpected feeling as I sat at NORD’s Rare Disease conference: This is such a refreshing environment!
Beyond the great exchange of information and ideas, I was struck by the way the conversation took place. The rare disease patients and caregivers were positioned at the center of discussions, and their voices carried elevated weight that was never far from mind. It is their voices, after all, that best articulate the vital objectives of this rare disease community: find better ways to diagnose and treat; improve access to care; enhance the quality of people’s lives; and ultimately, discover cures.
Those in attendance were reminded that the issues surrounding rare diseases are anything but black and white, even if those are the colors of the rare disease community’s symbolic zebra. Policy issues, life and death challenges, and implementing reforms are complicated matters. Yet, the summit showed the value of bringing stakeholders to the table, even those who hold different viewpoints. Patients, caregivers, clinicians, leaders of the US Food and Drug Administration, advocacy groups, representatives of pharmaceutical companies, and researchers were having constructive conversations, even on emotional and/or politically charged issues.
Kudos to NORD for demonstrating how to promote collaboration, an open exchange of ideas, and respectful discourse aimed at reaching common goals. I likely wouldn’t have appreciated these aspects had the summit not taken place during the final weeks of the presidential election.
The Rare Disease Summit left attendees with hope that transformative change and progress are possible. It also served as a much-needed reminder that when it comes to solving healthcare problems, collaboration is king, and the voice of the patient appears to have assumed its rightful place as queen.
Perhaps the voice of the voter can find its rightful place in our election process and, in so doing, carry hope for the future.