/Encouraging Rare Disease Connections at the NORD Conference

Encouraging Rare Disease Connections at the NORD Conference

By |2018-10-30T11:39:34-04:00December 16th, 2015|Advocacy, Newsletter|

National Organization for Rare Diseases (NORD)The National Organization for Rare Diseases (NORD) held its 2015 Breakthrough Summit October 21-22 in Arlington, Virginia. This year’s event convened top leaders from the FDA, NIH, Industry, Patient Groups, Payers and Research Institutions to address the progress of rare disease diagnosis, genomics, drug development, patient engagement, patient-centered research models, product approvals, FDA oversight and market access to orphan products.

LRG staffers Erin Kristoff and Mildred Menos were in attendance and were able to listen and engage with presenters at this innovative conference, which kicked off with an inspiring keynote address by Treacher-Collins patient advocate, Jono Lancaster.

Inspiring speeches were given by key NIH and FDA representatives including Director for the National Center for Advancing Translational Sciences (NCATS), Chris Austin and FDA’s Center for Drug Evaluation and Research Director, Janet Woodcock. Breakout sessions focused on vital issues like fueling drug access, precision medicine and patient-centered outcomes, but one of the most beneficial and thought-provoking aspects of the conference was the opportunity to make connections with other advocates in the rare disease community. Nothing can replace the help you are able to provide and gain from others facing similar challenges.

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