There’s been a rare disease renaissance of late and like many I know, I couldn’t be more thrilled.
I know from experience that rare is a beast. Almost six years ago, a rare diagnosis took my father and has threatened to take my daughter, Cambria, on 4 separate occasions since 2009. It’s likely that my own rare diagnosis caused the loss of four of my babies to early miscarriages and the late-term miscarriage of my son, Spencer. Rare has inflicted pain on my family and the casualties are very real. With that pain, however, a new family has been created – my rare family.
Since becoming an advocate over a decade ago, I’ve watched time and again as members of my rare family have faced their own battles – finding a diagnosis, sourcing treatment options, fighting for access to treatments. The rare family always rallies, virtually if need be, to support each other.
We’re fortunate to have amazing annual events for the rare community. From disease-specific conferences like the one held by the MAGIC Foundation for families facing growth hormone disorders to more inclusive general events held by Global Genes and NORD, each event is designed to help patients build their resource network.
At the events I’ve attended over the years, it’s been the same familiar faces in the room. Reassuring, yes, but highly exclusive to those stuck at home or in the hospital, unable to take their rightful seat at the rare table. For those unable to travel, it’s a carousel of missed opportunities for their voice to be heard and their experience to be shared. The Rare Fear of Missing Out – or FOMO – is never more tangible than when scrolling through your Instagram feed, watching others do what you cannot.
The truth is, “traditional” advocacy is a luxury most can’t afford. For those of us who are lucky enough to attend these events, there’s a treasure trove of information, resources, and contacts that likely we would never find anywhere else and tuning into a live stream, while helpful, doesn’t establish the kind of access patients need. So the disconnect between those at the table and those at home has grown – until now.
It’s time to leverage the technology we’re relying on for innovative rare cures and treatments to build another tool – a global rare disease community. In the age of Facebook and Instagram, some might argue that there’s no need for a new platform to connect patients and caregivers with the resources they need. Private groups, instant messenger, and offline discussions via email do appear to close the gap, but in reality, they widen the chasm when it comes to inclusion. Community events like patient meet-ups and educational conferences are designed to launch and bolster relationships that may or may not live on in social media but they fail to provide broad exposure to resources beyond those in attendance. The Rare Fair is our answer to the challenge of linking rare disease populations with the global rare community.
The Rare Fair is a 100% virtual event that connects patients, caregivers, non-profits, researchers, med students, nurses, educators, industry partners, insurers, pharma companies, and other stakeholders across the globe. We don’t seek to replace traditional events, but to supplement these events with a virtual platform that includes more rare voices in the discussion. That’s why the theme for this year’s event is #WelcomeToTheTable – we saved everyone a seat.
When I created The Rare Fair last year, my team and I designed the event to be that bridge – a place to bring the world’s top rare disease experts and resources together with patients and caregivers on a single platform, promoting collaboration, forging connections, and building relationships. At our inaugural event, we hosted over 250 attendees from 79 disease groups in 32 states and 6 countries – one attendee even joined us from her hospital bed!
So what does a virtual event like “The Rare Fair” look like? Pretty much like any other traditional conference or event.
The Rare Fair features:
· Keynotes and Breakout Tracks. You’ll hear from the top leaders in rare, from patients and advocates to researchers and physicians. With six breakout tracks, there’s something for everyone.
· An Exhibit Hall and Population-Focused Community Booths. While every rare disease comes with a nuanced set of challenges, chances are if you’re raising a child with a rare diagnosis, you’re facing the same struggles as other rare parents. Community booths feature the very best resources for population-focused groups, complete with scheduled live chats.
· Networking Opportunities. Rare disease management goes beyond the intricacies of medical appointments and research. Our Patient Education Room is packed with resources to help you manage the financial, educational, legal and other aspects of a diagnosis.
· A Patient Education Room. Rare disease management goes beyond the intricacies of medical appointments and research. Our Patient Education Room is packed with resources to help you manage the financial, educational, legal and other aspects of a diagnosis. Want to know more about the clinical trial process? This is where you’ll find the answers you’re searching for.
· A Digital Binder. For attendees wanting to keep track of the amazing resources featured at The Rare Fair, we offer a digital binder that helps organize and save materials of the attendee’s choosing for later reference.
· Disease-Specific Patient Resource Rooms. Our disease-specific patient resource rooms allow selected disease groups the opportunity to network with other patients and caregivers while learning about new resources and exploring treatment options.
· Metrics That Matter. We know how hectic traditional events can be. It’s a challenge to keep track of everyone’s story and the stack of business cards we’re left with after 10 hours on your feet. With the luxury of technology and the blessing of attendees, My City Med allows us to provide exhibitors with 35 different metrics from who dropped by your booth to which materials they viewed while there.
· Engagement & Gamification. It can be tough to engage with attendees online when there’s so much competition for attention. That’s why we employ a gamification model to ensure that attendees visit every room and every exhibitor booth to build their network of resources.
· Swag. Everyone loves a little swag. Our swag boxes, or “Rare Care Packs”, are shipped to attendees prior to the event with strict instructions for recipients to not open their “Care Pack” until event day. “Rare Care Packs” offer our industry partners an unprecedented opportunity to connect directly with Fair attendees at a time of the attendee’s choosing, when their focus is 100% on their “Care Pack”. Attendees love the opportunity for a little indulgent while learning about new offerings in rare.
· On-Demand Access. Can’t make it to The Rare Fair during our 12-hour event? No problem. All content from The Rare Fair, from exhibitor booths to breakout sessions, is available on-demand for 30 days after the event. For exhibitors, any attendees who access the event on-demand will be able to reach out to your booth representative for the entire 30-day on-demand period. No more missed connections!
· Affordable ticket prices and zero jet lag. No more traveling with endless medical gear or making arrangements for a loved one’s care while you’re out of town. Attend from anywhere in the world with no layovers.
With highly affordable ticket prices ($24 for patients/caregivers, $99 for industry), no travel expenses, no per diems, no lost wages, and zero jet-lag, The Rare Fair is poised to be the world’s largest gathering of rare disease patients and stakeholders.
But we can’t do it without a little help. If your organization is interested in an exhibitor booth or sponsorship, we’d love to chat with you – the time to collaborate and pool resources is now.
Want another reason to feel good about your ticket to The Fair? A portion of all proceeds will be donated to The Children’s Inn at the NIH to help support rare patients and families receiving treatment there.
We look forward to seeing you at The Rare Fair on September 27, 2019.
Welcome to the Table,
Founder and CEO