Announcements

FCF moderates panel with FDA and Broad Institute at NORD summit

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD hosts a variety of events throughout the year, including the Rare Diseases and Orphan Products Summit. This event draws together the top leaders from the FDA, NIH, patient organizations, industry, payers and research institutions to address issues of critical importance to the rare disease community. This year, given the impact of the COVID-19 pandemic, the 2020 NORD Rare Diseases & Orphan Products Breakthrough Summit is scheduled as a virtual event on October 8 and 9.


As part of that two-day event, John Hopper; President of FCF is moderating a discussion entitled “Increasing Application of Patient-Reported Data in Rare Oncology” on Friday, October 9 from 12:45 to 1:30 pm. Featured speakers in that panel discussion include:

  • Vishal Bhatnagar, MD; Associate Director for Patient Outcomes, Oncology Center of Excellence, US Food and Drug Administration
  • Corrie Painter, PhD; Associate Director of Operations and Scientific Outreach for the Broad Cancer Program, Associate Director of Count Me In, Broad Institute.

Other topics of discussion during the summit of interest to the fibrolamellar community will include:

  • The COVID-19 pandemic’s impact on the rare diseases, drug pricing, advancements in technology, tools for accelerating cures and more
  • Sessions on telehealth and rare diseases, streamlining orphan drug development, gene therapy and genome editing research
  • A discussion of capitol Hill policy developments and impacts and their potential impact on the rare disease community
  • The 2020 Rare Impact Awards on October 9.

For more information about the Rare Diseases and Orphan Products Breakthrough Summit, or to register for the 2 day event, click here.