The National Organization for Rare Disorders (NORD) has been a leading patient advocacy organization since the 1980s, helping advance the identification, treatment, and cure of rare disorders. In October 2021, the 501(c)(3) organization will be holding a “can’t miss” event in the rare disease sphere: the 2021 Rare Diseases and Orphan Products Breakthrough Summit (NORD Summit). According to Charcot-Marie-Tooth News, this Summit will be held virtually – in part due to the continued spread of COVID-19. However, this virtual event will still offer amazing insights into research, public health, and patient advocacy for all stakeholders.

Interested in learning more about the 2021 Rare Diseases and Orphan Products Breakthrough Summit, or #NORDSummit? Take a look at the information and register here.

NORD Summit

Currently, there are over 25 million Americans living with a rare disease or disorder. During the NORD Summit, stakeholders – including patients, advocates, caretakers, industry representatives, those with academic interests, government or policy leaders, and others – are invited to join the conversation. During the Summit, there will be multiple discussions regarding critical topics in rare disease and public health. For example, some items on the agenda include:

• Rare Diseases as a Public Health Challenge
• Designing Trials for Inclusivity, Equity, and Engagement
• Gene Therapy and Gene Editing: Current Status and Potential Impact on the Rare Disease Community
• Breakout sessions such as:
  • Community and Connectivity for Rare Disease Clinicians and Researchers
  • Healthcare System Savings with Genetic Testing
  • Advancing Rare Cancer Awareness and Education Among Healthcare Professionals
  • Patient Organization Leadership Form: Advanced Fundraising: Developing your Business Proposition and Engaging Industry

Outside of the numerous meetings, breakout sessions, and networking opportunities, NORD Summit attendees will also be able to visit a virtual exhibit hall, schedule peer-to-peer meetings, and liaise with event sponsors. While networking sessions will not be recorded, other workshops will be, allowing attendees to view the content for an additional 30 days.

Important Things to Note

Before attending the NORD Summit, here are some important things to note:

• Prices to attend the conference can be found here.
• NORD advises attendees to use Microsoft Edge, Firefox, or Google Chrome to attend the event, as these work the best with the NORD Summit online platform.
• Once registered, you are only allowed to access the Summit from one device (if you only paid for one registration). Feel free to purchase multiple registrations to use multiple devices. If you need to transfer your registration, please email [email protected] at least 24 hours prior to the event.
• During the NORD Summit, please share what you are learning online! Also feel free to share content or tag NORD on Facebook and Instagram, as well as to use the hashtag #NORDSummit across all social media platforms.

NORD Summit and Patient Worthy

Patient Worthy is excited and proud to be a Media Partner for the 2021 NORD Summit taking place from October 18-19, 2021. This will be one of the largest multi-stakeholder events in the rare disease world, and we hope that you will join us by registering for the event.