At Rare Patient Voice, we love getting out from behind our screens and meeting our community in person. There’s nothing better than being in person and hearing the stories that made our community what it is today. In-person conferences give us the chance to connect face-to-face with patients to not only recruit for our studies but also ensure we’re working with real, authentic people and to show our community that we’re real too. We’re here to help improve the daily lives of patients and family caregivers, not just from a distance, but right alongside them.
When we meet patients and connect on a personal level, it deepens our relationship with them and helps raise awareness not only about their specific condition but also the different types of research Rare Patient Voice has to offer.
A couple of weeks ago I was able to attend the Ft. Lauderdale Abilities Expo and connect with so many wonderful patients and caregivers. One patient told me, “It feels so amazing someone out there cares and wants to listen to my experiences.” And that’s truly what we want, for our community to share their voice and be heard.
We attend many different types of conferences. On the patient side, my favorite event to attend is the Abilities Expo because it’s for everyone. We connect with a wider range of patients and hear so many different experiences; it’s so inspiring. There are exhibitors from wheelchair companies and adaptive car companies to adaptive art to companies like us. We also attend conferences for specific conditions, like CancerCon (Stupid Cancer) and Epilepsy Awareness Day. 
When we go to events, the main thing we want to do is connect. We understand that when people see something like “$120 an hour for a study” online, it can sound too good to be true. Talking to patients and caregivers in person gives us the opportunity to build trust and form a relationship. I often tell people that Rare Patient Voice is the bridge between patients and caregivers and the researchers who need their insights. We help speed up the recruitment process for researchers while making sure patients’ voices are truly represented. If someone wants to join our community, we hand them a clipboard to fill out their basic information, then we take care of the rest when we’re back home.
This past event was special because we got to introduce our new signage for patient events. We had tons of people scanning our new QR code on the sign, and for our friends who didn’t have enough time to stop and talk, they had the opportunity to take a photo of it to remember what Rare Patient Voice is at a later time. We also like to bring swag to our events. Our bags and Rarity stickers are our best hits.
This Abilities was a fun event to be at. We connected with some of our current referral partners who were also exhibitors at this event. Help Hope Live is an amazing nonprofit that helps with medical fundraising for the expenses insurance doesn’t cover. We met with Kelly and Sonny at their booth and went to a networking event together held by the Abilities Expo. Of course we got a photo together after I went to the face painting table and got my face bedazzled.
After I leave an event, I’m always in awe of the stories I’ve heard and how inspiring our community is. Being able to attend conferences and having a chance to speak with patients and their families and to listen and learn from them makes me so thankful for what Rare Patient Voice does. I can’t wait to meet with more of our community in December at the Dallas Abilities Expo!
