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Jul. 16, 2021

TOPIC: Patients & Members

Looking Back at an Unforgettable 2021 Living Rare, Living Stronger Forum

Posted by Rohan Narayanan

Last month, the National Organization for Rare Disorders (NORD) hosted their second virtual Living Rare, Living Stronger NORD Patient & Family Forum. From June 25-28, enthusiastic attendees from around the globe tuned in live for a unique weekend of inspirational stories, educational workshops, expert speakers, networking opportunities, and the Rare Impact Awards.

Highlights from a Weekend of Connection and Education

  • Nearly 700 total conference registrants, including over 500 first time attendees
  • Over 500 attendees signed up for discussion groups or 1:1 networking meetings
  • Between four plenaries and 12 breakout sessions, NORD invited more than 60 speakers internationally and from the US to speak in the virtual program
  • Two Apple Watch winners selected from 350 entries – with one still to give away to on-demand viewers!
  • Many more prizes, games, and a tie for first on the conference leaderboard
  • 40 conference sponsors, exhibitors and supporters – headlined by gold sponsor Horizon
  • Six media and publication partners

A Star-Studded Awards Show

  • The packed weekend concluded with the celebration of the Rare Impact Awards, hosted by Dr. John Whyte of WebMD
  • 12 Rare Impact Award honorees and nine Industry Innovation Award recipients
  • The Abbey S. Meyers Leadership Award to the Desmoid Tumor Research Foundation
  • The Public Health Leadership Award to Peter Marks, MD
  • Special Recognition to Christopher Austin, MD
  • Three electric performances by Ali Stroker and special appearances from actress Denise Richards and TLC singer Tionne “T-Boz” Watkins

Content Available On-Demand! Get Access Now

You haven’t missed your chance to access (or revisit!) all the Patient & Family Forum dynamic content!

What People are Saying – Attendee Testimonials

  • “I found wonderful tidbits in every talk… NORD is a wonderful resource for patients, caregivers, and even doctors.” – Tracey, Caregiver
  • “It always gives me hope and energy to go to NORD events. So many people who are motivated to help!” – Sara, Advocate
  • “The interactive participation of the audience using the chat feature helped me feel more a part of the activity. I thoroughly enjoyed hearing about other organizations and resources out there for the Rare community.” – Connie, Speaker
  • “I have made some great connections and it’s amazing how helpful certain people have been. I feel I’ve made a huge stride forward today.” – Natasha, Caregiver
  • “Depth of encouragement and support from the speakers and the live chats, Even just viewing a few slices of the NORD resources, this program clearly demonstrates the amazing breadth, commitment and expertise available through NORD.” – Jim, Caregiver
  • “Being kind of new to this world and not having found a lot of other people just like me, it’s so valuable to know that there are other advocates and programs out there already, so we really don’t have to recreate the wheel. I can jump in with what others have going or can connect with them to start something of my own using their advice and knowledge base.” – Anna, Caregiver

Join Us in 2022!

The Living Rare, Living Stronger Forum will be back next year. Stay tuned for more details, registration, and opportunities to partner with NORD.

For more rare disease information, visit NORD’s Rare Disease Database.