Kind of on a whim I decided to head to San Diego (a great place for whimsical travel) for the RARE Patient Advocacy Summit by Global Genes. To be fair, Effie Parks from Once Upon a Gene Podcast had told me about it before and I’d been on the fence on whether I should go or not. Some other friends chimed in about being in San Diego as well, and I decided to last minute attend the event.
I’ll admit that as an IT person focused on health IT, I initially felt like a fish out of water. Luckily, I bumped into a number of amazing patient advocates (@rarelikeher and @BarbyIngle) and caregivers (@EMoriartyWade) I’ve known on Twitter, and so I felt at home pretty quick. It’s incredible how knowing a few people can change your experience at a conference. It’s also wonderful that Twitter brought us together for years before we met in person.
What’s amazing about this event is that everyone you met had a story to tell. As I walked through the exhibit hall, I started to realize that the majority of exhibitors were foundations or other organizations that were largely started due to some experience in the health system. Everyone had a story to share about themselves or someone they loved.
As an emotional person, I’ll admit that it was slightly overwhelming to sit and hear their stories. And yet, I also wanted to hear every story. Each experience was unique and there was a camaraderie at the event that was special. I commented to Effie Parks after the event that she was part of such an incredible community. And she kindly reminded me that “For a club nobody wants to be in, it sure is the best one in so many ways.”
This describes the experience for me so well. On the one hand it was heartbreaking to hear the health struggles of so many. Each had their own twist and many with a description of where the current health system is letting them down. However, along with the heart break there were so many messages of hope, joy, and optimism for the future amidst serious challenges. It was powerful to hold both of these emotions at the same time. Seeing them do so was inspiring.
While some organizations even competed with each other, I saw essentially competitors sitting side by side on a couch showing what they were working on because their goal was to improve the experience for patients with rare diseases. Their goal wasn’t to get rich and crush their competitor. If sharing would help more patients, then sharing was worth it.
One similar comment happened in a session where an audience member suggested someone offer their solution to the community as a whole rather than just to people a specific disease. While I heard stories of patients where they were the first person ever diagnosed with their disease and now they know 30 people in the world with it, there was also the acknowledgment that the rare disease community as a whole has millions and millions of members. That juxtaposition is one I’m still trying to fully comprehend and understand.
Of course, being Healthcare IT Today, I had to stop by the “Data Tech for RARE Care” session. On this panel were 3 entrepreneurs who created apps specifically for the rare disease community. I actually did a video interview with each of them, so I’ll save the details for when I share those in a future article. However, what was so incredible was their absolute focus on the needs of the patient and caregivers. While some health IT companies do incredible things for patients and even take time listening to patients, it all paled in comparison to how these 3 entrepreneurs approached their applications. Helping patients wasn’t just a means to an end. It was the entire focus and goal of their effort. It’s part of the ethos of who they are. It was eye opening to see how different choices were made because of their perspective as a patient and caregiver.
One other cool thing was that many of those in attendance had literally written the book on rare disease. Well, at least their story and their experience with rare disease. Here are three people I met that were sharing their books:
In case you didn’t realize it, going to the @GlobalGenes conference was like going to a book fair. Here’s some authors I saw at #GGSummit22
Rare Like Us from @rarelikeher https://t.co/8acra0M67x
Incredible story of losing her father and finding herself. #HITsm pic.twitter.com/EqdQvPhisf
— John Lynn (@techguy) September 15, 2022
From Wheels to Heals by @BarbyIngle https://t.co/gjJD5OHaBm
Ok, Barby has like 9 books: https://t.co/3dp3F1W7KC
This one shares her 20 years of navigating chronic pain and diseases and how to find treatment to restore a quality of life. @globalgenes #GGSummit22 #HITsm pic.twitter.com/mM6AykiuOP
— John Lynn (@techguy) September 15, 2022
More Than You Can Handle:A Rare Disease, A Family in Crisis, and the Cutting-Edge Medicine That Cured the Incurable by Miguel Sancho https://t.co/AJXdkAqoba@mortonpr shared the book about her husband’s struggle with a rare disease child. @globalgenes #GGSummit22 pic.twitter.com/63wZpjRm4c
— John Lynn (@techguy) September 15, 2022
I deeply appreciate Global Genes for welcoming a tech guy like me to their event (especially so last minute) and all of the kind people I met that were willing to be so vulnerable and share their stories.
