The COVID-19 pandemic has disrupted many plans in 2020, and the National Organization for Rare Disorders’ (NORD) Living Rare  Living Stronger Conference looked like it would be no different.  Patients, caregivers, and medical professionals from around the country look forward to this meaningful weekend every year. Instead of postponing, NORD found a solution to provide the rare community a safe online alternative to their in-person summit by leveraging a leading digital platform specializing in online events.

We leveraged our proprietary Conduit platform, an interactive solution that enables large-scale online events, live chats, and live video streaming across desktop, mobile, and social media to produce, host, and collect insights from the two-day virtual forum that included 19 sessions, four ‘tracks’, and more than 65 speakers.

Speakers for the program included leading researchers, advocacy and foundation heads, patients, caregivers, clinicians, Broadway stars, and wellness experts. Dr David Fajgenbaum, opening plenary speaker, wears several of these hats – front-line clinician and researcher at the University of Pennsylvania, author of Chasing My Cure: A Doctor’s Race to Turn Hope Into Action, Executive Director of the Castleman Disease Collaborative Network, and patient battling Castleman’s Disease.

Offering digital opportunities for patients is so important under ‘normal’ circumstances. In today’s COVID world it’s critical for rare disease patients, who are typically at a greater risk of infection from compromised immune systems, to have access to good information online.  Afterall, as one presenter shared in her session, “We were social distancing before it was cool.”  This year’s Living Rare Living Stronger attendees took to social media to share a little about why they were grateful for the online platform…

“Even better yet, I can stay in an inclined position, well enough to participate without having a Dysautonomia episode!”

“…This has been great watching from home. Especially since Monday is my #infusionday and I usually don’t feel the best prior.”

Blogger, Sunny Ammerman, better known as ‘insomniadoodles,” is a chronic illness and rare disease advocate who has written many articles detailing her life with rare conditions. She discussed her experience with the virtual conference and platform in her Living Rare Forum Recap.

“I had previously attended other virtual conventions (none of which were affiliated with NORD), and they weren’t the best experience to be honest, so I was admittedly a little uncertain about what to expect in terms of quality especially considering it was organized in such a short time frame. I was fully anticipating bugs, crashes, and other tech-related disappointments, which had been my experience with those other virtual events in the past.”

“To my pleasant surprise, NORD did an absolutely amazing job with their virtual setup! I didn’t experience any issues at all! The platform they used to host the event was clean, well-organized, and beautifully designed. Their agenda was clearly listed on the home page with links taking you to each event, and there was an active chat window with a room for technical support and a room for connecting and chatting with other participants.”

While the delivery method may have looked a little different this year, the content discussed, and connections made were just as genuine. Participants left inspired, validated, driven, comforted, and understanding they are not alone.

“When you find something that sets your soul on fire, something changes. I needed this today. Feeling validated and driven.”

“What an amazing story! @christiansings sharing in the #LivingRareForum how #genetherapy changed his life. Not a dry eye anywhere!”


About the Platform

NORD leveraged PlatformQ Health’s digital learning platform to give their participants a convenient, user-friendly experience that would allow the rare community to connect and learn effectively, like they would have attending their in-person summit.

Trying to bring an in-person event online is not as simple as creating a webinar. With 10 years of experience producing, hosting, and delivering virtual events to HCPs and patients, we are experts in driving online engagement and have developed a customizable platform for our partners to create meaningful educational experiences online.

Virtual engagement and video-based education is dominant at this moment – and will continue to shape the way people engage with educational content. It all comes down to a digital-first design. When choosing a platform or partner to run your digital education events its’s important to consider the following: Was this made to engage an online audience, or is this a quick fix to an issue (that won’t be leaving us quickly)? Does it allow participants to interact with speakers and each other? Can you measure the impact of the education and participant satisfaction?


Our solution includes:

  • Customizable platform leveraging the partner’s brand, content, and user-friendly layout
  • Product and tech support, including live help for attendees, gated access solutions, hosting services and best practice guidance
  • The capability to simulcast that content across social media platforms like Facebook Live, Twitter and YouTube Live
  • One-on-one and group training with production team for speakers & staff
  • Live engagement hooks, including live Q&A,polling and chatting
  • Integrated learning management system, allowing you to track the effectiveness of your programs and participant satisfaction
  • Audience generation, marketing support, and syndication opportunities to increase attends and impact of education
  • Sponsor solutions, including tiered listings and individual, customizable pages
An Ongoing Partnership

In 2019, PlatformQ Health and NORD established a partnership to provide online Continuing Medical Education for clinicians as well as tailored education for patients and caregivers. Together, NORD and PlatformQ Health target resources to health care professionals, patients, and families to facilitate timely diagnosis and improved care for people with rare disorders. The virtual Living Rare, Living Stronger event was an excellent opportunity to expand our collaboration to support the rare community.

Interested in learning more about engaging your members online when in-person is off the table?  Email us at for a private demo, and personalized solution.