Article | February 28, 2019

Looking Beyond The Impossible For Rare Diseases

Source: United BioSource LLC (UBC)

By Shazia Ahmad, Director, Patient & Physician Services, United Biosource

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The NORD Rare Disease Summit is something I look forward to each year.  It is a time to share and discuss all that we each do in the rare disease community−whatever area we work in, be it drug development, clinical research, regulatory compliance or patient advocacy. The Summit offers a unique opportunity to collaborate as a community, truly learn from one another, and most importantly return to our work with a renewed focus and passion for advancing treatments for patients with a rare disease. These connections help me to keep the perspective of patients and families front and center. They are the reason why I go to work each day.

This year’s Summit held in Washington D.C., Oct. 15-16, brought together almost 700 stakeholders including representatives from the FDA, NIH, orphan drug development industry, and most importantly patients, families, and patient advocacy groups.

I came away from the Summit this year with a clear vision of the impact patients and advocates are having in the new era of patient-focused innovation.