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The Living Rare, Living Stronger Forum will be a virtual program this year! NORD’s goal is always for our annual Forum to provide the rare community with networking, education, inspiration, hope and fun. That hasn’t changed for this year’s virtual event.

Living Rare, Living Stronger 2020 will be a virtual forum!

The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives are always our top priorities at NORD. The COVID-19 pandemic necessitates a new approach to many aspects of life—especially those that involve us gathering together—and with that in mind, we have made the decision to move the 2020 Living Rare, Living Stronger NORD Patient and Family Forum from an in-person format to a virtual event. The 2020 Rare Impact Awards will now be presented at a later date in Washington, DC, for this year only.

By creating a virtual environment for Living Rare, Living Stronger, we will make the Forum a truly patient-centric and even global event, accessible not only to those with the ability to travel but also those who are choosing not to, as well as those who would not have been physically able to attend. Through it all, we will maintain our Living Rare, Living Stronger objectives: networking, education, inspiration, hope and fun!

Please check back often as more information is being released daily.


Event Overview

Living Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to inform their practices and studies.

Four distinctive program tracks will present workshops geared towards:

  • Newly diagnosed patients
  • Long-term patients
  • Caregivers
  • Medical professionals and students

In addition to the sessions above, this year the Living Rare Forum will provide interactive Q&As and inspiring online panels presented by patients, caregivers and top rare disease medical experts. And there will also be fun and surprises!


Code of Conduct & Media Guidelines


Thank you to all of our sponsors!

Key Contacts

General Inquiries: [email protected]
Sponsorship Inquiries: Alexa Moore at a[email protected]
Media Inquiries: Laura Mullen at [email protected]