Mary Dunkle, Senior Advisor for the National Organization for Rare Disorders (NORD), discusses the upcoming NORD Breakthrough Summit 2021 being held October 18-19, 2021.

As Ms. Dunkle explains, the summit is one of the most important conferences in rare diseases as it brings patients, caregivers, physicians, and individuals involved in government and/or pharmacy together. The conference will be held virtually again this year, though Ms. Dunkle notes unique benefits of this such as the likelihood of more international participants and busy parents being able to attend the conference.

Topics that will be covered at the conference include: 

  • Rare diseases as a public health challenge
  • Impact of Covid-19 on clinical research
  • Designing trials for inclusivity, equity and engagement
  • Drug pricing
  • FDA patient engagement
  • Gene therapy and gene editing
  • NIH townhall

In addition to the above plenary sessions there will be several breakout sessions and networking sessions for attendees to participate in.

The Summit will also include a who’s who of the rare disease and scientific community, including:

  • Francis Collins, MD, PhD (NIH)
  • Anne Pariser, MD (NCATS)
  • Peter Marks, MD, PhD (FDA)
  • Janet Woodcock, MD (FDA)
  • Debra Houry, MD MPH (CDC)
  • Michelle McMurry-Heath, MD, PhD (BIO)
  • Olaf Bodamer, MD, PhD (Harvard Medical School)
  • Jeanine D’Armiento, MD, PhD (Columbia University)
  • Diva De Leon-Crutchlow, MD (CHOP)
  • Titilope Fasipe, MD, PhD (Baylor College of Medicine)
  • Marshall Summar, MD (Children’s National Hospital)

Click here to register for this year’s NORD Breakthrough Summit.

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