Rare disease

Takeaways from the NORD Rare Summit: Zebras Among Us

I look forward to the NORD Rare Summit each year.   It is a time to reflect on the work all of us do in the rare disease community−whatever area we work in, be it drug development, clinical research, regulatory compliance or patient advocacy. It’s a wonderful 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 rare disease patients, knowing that the patient is central to all our work.

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Case Study Video: An Integrated Solution for Your Orphan Product

Rare-disease patients need special attention, not only upon therapy initiation, but throughout their entire therapy journey. UBC has the capabilities to start at the very beginning of this journey — transitioning patients from a trial drug to a commercialized product — and still provide high-touch care — coordinating pharmacy triage and beyond.

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Making Rare Diseases Voices Heard

Today, rare-disease communities around the world are coming together to raise awareness for the roughly 7,000 different types of rare diseases and disorders. Shazia Ahmad, our Patient and Physician services rare-disease expert, will be attending Rare Disease Day at NIH to celebrate this year’s theme, “Patient Voice.”

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