For rare disease patients, ‘every day is Rare Disease Day’

By Jenni Spinner contact

- Last updated on GMT

(nambitomo/iStock via Getty Images Plus)
(nambitomo/iStock via Getty Images Plus)

Related tags: Rare disease, orphan disease, preclinical, Cystic fibrosis, Patient centricity, Clinical trials

On February 23, five days ahead of the day of rare-disease awareness, OSP’s Rare and Orphan Diseases webinar will share insights from top industry experts.

According to the National Organization for Rare Disorders (NORD), about 300m individuals around the globe are impacted by rare diseases; what’s more, countless others are struggling without a diagnosis. To help those millions of patients, NORD and other rare-disease organizations advocate for new therapies and support.

"For those affected by rare diseases, every day is rare disease day​," said Mirta Avila Santos, executive director of the American Behcet’s Disease Association. “There has to be hope for better treatments and possible cures. Rare Disease Day raises awareness globally and provides our communities with the support and hope for better days ahead​.”

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While rare-disease advocates around the world will raise their voices on Rare Disease Day on February 28, three noted industry figures will share their informed views and fascinating experience during a webinar​ five days prior. Join your industry colleagues for the online event Rare and Orphan Diseases​, taking place February 23 at 10 am CST, and hear from:

  • Gunnar Esiason, executive vice president of strategy and advocacy, Boomer Esiason Foundation
  • Craig Martin, CEO, Global Genes
  • John A Phillips, David T Karzon Professor of Pediatrics, Vanderbilt University Medical Center

While hundreds of people have already registered for this event, it is a highly important issue, so we would like to see as many professionals from across the research and drug development landscape signed up. Please register here and share the link​ with any colleague you believe might be interested and could benefit from the information.

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