As a rare disease patient and advocate, I have been an enthusiastic supporter of the National Organization for Rare Disorders (NORD) for many years, so I was absolutely thrilled when I discovered the annual NORD Living Rare, Living Stronger Patient Forum was coming to Cleveland, Ohio in 2020! It’s only a few hours away from my home, so a hotel room was booked and road trip planned! I was excited at the prospect of meeting other rare disease patients and NORD representatives I’ve had the pleasure of corresponding with online, and had high hopes for networking and broadcasting live from the conference to share with fellow zebras at home!
And then… COVID happened. The closer time crept to the date of the conference, the less confident I felt about attending due to the growing number of infections and startling news reports claiming that this pandemic wasn’t going to end any time soon. Despite knowing in my gut that I probably wasn’t going to be able to go, I held stubbornly onto my hotel room reservation until NORD announced to my relief that the conference would be held entirely virtually with our safety in mind.
Like everyone else, I was a little sad that we wouldn’t be meeting in person, but the necessity for a virtual meeting was absolutely clear. Most rare disease patients (including myself) have compromised immune systems and are at a much higher risk of infection as a result. Having the forum virtually had the added bonus of allowing folks who have a much harder time traveling to attend as well, which was a silver lining that more than made up for the disappointment of having to cancel my much anticipated road trip.
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.
Regardless of my suspicions, I allowed myself to get just as excited as I would be attending an in-person convention! NORD made this easy to do by sending out a special package to the first 200 people to register, and I was one of the lucky recipients! It contained some NORD branded merch, including an absolutely adorable and squishy zebra stress “ball”, which would come into play later as I promoted the event live via twitter (see the slideshow at the end of this article).
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.
The two-day event took place on July 18-19th. The agenda included a number of different workshops and presentations with interactive Q&A sessions, each intended to address specific demographics, such as patients, caregivers, and medical professionals. Forum-goers were able to pick and choose which events to attend live based on their interests, and archives of all of the events remained available for people to watch even after the conference had concluded.
I chose to attend the events that pertained to patient advocacy, and NORD did not disappoint with the information provided. I learned a lot from those presentations, and the stories shared by presenters were both inspiring and relatable. I was absolutely overwhelmed with feelings of gratitude and validation. The people they had invited to speak were knowledgeable about their topics of interest, and conveyed what they knew effectively in ways that inspired me to reach out and get involved myself, which I gladly did. I’m currently in active correspondence with two of the presenters, and we are working on projects together that I would not have had the opportunity to get involved in had it not been for the forum bringing us together!
I was also able to network with other rare disease patients via a scheduled group Zoom call where others like myself joined in to share our stories and encourage each other to advocate for our community. My group was fairly small, but everyone I met in there was wonderful, and we all got the chance to speak and share what advice we had for one another. We decided to continue to stay in touch after the call, and I even added one of the attendees as a friend on Facebook so now I can appreciate her excellent choice in memes on my news feed. It’s awesome having a new friend in the rare disease community! If this was all I took away from the entire event, it would have been enough (happily, that’s not the case!). I didn’t experience any technical issues connecting to the call, but I know a sizable group of convention attendees had signed up for the networking session and were unfortunately not able to connect. NORD immediately sent out an email apologizing for the inconvenience and announcing that they would hold more networking events in the future.
There were many highlights of the event that I would love to gush about, but for the sake of keeping this article shorter than a novella, I’ll just share a few of my favorites. On the first day, we were treated to a unique, immersive sound bath experience from The Dojo Upstate which was as relaxing as it was surreal. We were asked to put on headphones and an eye mask if we had them (I had both on hand), and the guides from The Dojo took us on an incredible auditory journey using a special setup that allowed for amazingly high quality three-dimensional sound! They utilized instruments such as chimes and Tibetan singing bowls to coax us into a state of relaxation that I very thoroughly enjoyed.
The next day, we got to experience the deep, emotional story of a rare disease patient named Chloe who lived with Pulmonary Hypertension and a neurological condition called semilobar holoprosencephaly. She sadly passed away due to medical complications, but not before touching the lives of those around her through her love for music, which began as a way to facilitate communication and grew into a truly wonderful part of her life, allowing her to not only express herself, but share her light and talents in a beautiful and unique way. Her touching story of love and music was followed by wonderful performances by Chloe’s family and members of Breathless on Broadway, including a stunning cameo by Giuseppe Bausilio, an actor currently performing in Hamilton. Yes- THAT Hamilton! Needless to say, I was absolutely blown away.
The forum concluded with the “Zebra Pageant”, where attendees who had entered before the conference by submitting photos of themselves sporting their best zebra fashion and gear were then presented to the forum attendees with an introduction and a few fun facts. Everyone was then asked to vote to select two winners, who received $100 of NORD merchandise from the online store! There was a very active chat along with this final event, and it was so much fun to see everyone in there enthusiastically cheering on the winners and just spreading around so much love and support for their fellow zebras!
Overall, the Living Rare, Living Stronger Patient Forum was a roaring success, and I am so glad I was able to attend! I’m hopeful that next year we will be able to have the event in-person, but even if that’s not possible, I know from this experience that I’ll have a valuable and worthwhile time regardless. I would love it if they could keep a virtual option for homebound Zebras even if we do get to attend in-person, and I’ll do what I can to advocate for that option so everyone gets a chance to be a part of this truly awesome experience.
For now, I’m just looking forward to the Rare Diseases and Orphan Products Breakthrough Summit coming up this October, which will also be virtual. Registration is open, so please consider signing up to join me there!
Throughout the Living Rare Forum, I posted live updates to my Twitter account accompanied by photos that included the little Zebra I had received in the mail. Here is a slideshow of all of those photos, which I am calling “Zebras Out Of Context”! You can find all of these photos (with context) on my Twitter with the hashtag #LivingRareForum!