Connecting with the Rare Disease Community
For those of you who don’t know, I work in healthcare communications. I’m sure you’re wondering – what the heck does that mean? In the simplest terms, I work with healthcare companies on their communication strategy – telling their story (the who-what-why-how) to different audiences. I’ve worked in healthcare comms for my entire career, previously on the agency side where I had many different clients and worked in many different disease states. And now, I work “in-house” for a biopharma company that primarily works in the rare disease space.
I’ve stayed in healthcare because I love the idea of helping people through my work – and I’ve had the opportunity to meet so many amazing people who live with all types of conditions. It’s incredible to meet and talk to these communities – it makes what I do feel meaningful.
Recently, I had the opportunity to attend an important community event for a specific rare disease. For our comms work, we filmed interviews with a few people and spoke with many others about their experiences living with this condition. It was an incredibly moving, inspiring, and thought-provoking weekend for me – not just professionally, but personally, too.
In this community, many of the people with this rare disease are disabled and use mobility aids like canes, walkers, or wheelchairs. They wanted to share their stories because they were passionate about raising awareness of their condition and disability in general.
I was so thankful to meet them and that they trusted us enough to share their stories. I left the weekend totally exhausted but also with a full heart. I was proud of the work we did and moved by their advocacy. It made me want to do more with my MS advocacy work, because it IS important to raise awareness of different chronic illnesses or other diseases.
After getting diagnosed with MS, I had a kind of full-circle moment when it came to work. I’ve talked about this on my blog before, but it was interesting to suddenly be the “patient” – an audience I’ve thought of and worked toward reaching in my professional life. I think my personal experience has made me approach my work differently, in a good way.
I’m thankful for the times I get to meet other “patients” and hope they feel the same!
