Event: “The Time is Now’ – NORD’s 2019 Rare Disease Summit

The National Organization for Rare Disorders (NORD) is hosting its 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit on October 21-22 in Washington, D.C.

NORD is a great organization and resource for the rare disease community.

“The pace of discovery in rare diseases has gone from brisk to hypersonic,” says Marshall Summar, MD, chairman of NORD’s board of directors.

Some speakers include:

  • The acting commissioner of the U.S. Food and Drug Administration (FDA)
  • Director for the Center for Drug Evaluation and Research (CDER)
  • Director for the Center for Biologics Evaluation and Research (CBER)
  • Director of the Center for Devices and Radiological Health (CDRH)

Other speakers on the agenda include: Brad Wong, president and CEO of the Pulmonary Hypertension Association, Dawn Rotellini, senior vice-president at the National Hemophilia Foundation, and more.

According to the agenda, topics to be covered include gene therapy, newborn screening, curative therapies for rare cancers, investment opportunities in orphan products, social media platforms for organizing patients, patient registries, and natural history studies.

Patient Worthy has covered many of these topics, so this is worthwhile event. And this year’s theme is ‘The Time is Now’ — very apt, considering the great strides the rare disease community has made.

“It’s clear that now is the time for driving innovation, advocacy, research and new therapies,” said Peter L. Saltonstall, NORD’s president and CEO. “This year we’ll be taking on timely topics such as the challenges of gene therapy, retaining treatment affordability while sustaining innovation, and fostering dialogue among payers, providers, and patients.”

The summit will cover so many important topics and discussions to the rare disease community. So for those interested and are able to go, it is absolutely worth considering.

For more information, click here!


Have you attended a NORD event? Share your stories, thoughts, and hopes with the Patient Worthy community!

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