More than 7,000 rare diseases currently affect 25 to 30 million (or one in 10) Americans. Rare diseases are considered “rare” if they occur in fewer than 200,000 people, and how they manifest can vary widely. But what they often have in common is the obstacle course patients must navigate to get treatment, IF a treatment even exists … at this time, in fact, 95% of rare diseases have no treatment.
What Rare Disease Patients Face
Because rare diseases are rare, diagnosing them can be challenging — it can take years in some instances. But there are other obstacles, including feelings of isolation or abandonment; limited funding for research, meaning limited (or no) treatments; the challenge of finding HCPs or treatment centers with the right experience; and costly treatments and issues with reimbursement or financial assistance. It’s A LOT to deal with, particularly when you’re not feeling your best.
What’s Your Why?
In honor of this year’s Rare Disease Day, which was this past Monday, February 28, Intouch — and our parent company EVERSANA — employees gathered virtually to share their rare disease stories, not only to bring attention to rare diseases in general, but also to help explain their “why.” And by “why,” we mean what motivates them to do the work they do every day. We heard stories from our teammates about their own rare-disease challenges; about parents whose children have a rare disease; about siblings and mothers and fathers; even about coworkers with rare diseases who’ve made an impact on the lives of those around them. Each story was unique, but what they all shared was hope, determination, and a perhaps an above-average level of empathy for the patients they serve.
Working at Intouch … being a part of bringing those new therapies to people, can be incredibly gratifying. I’ve been on the other side and know how powerful the words “but there is something else we can try, something new” can be. – Intouch Employee
As a patient support navigator at EVERSANA, I speak from a voice of compassion and purpose. A rare disease is close to my heart. That is my “why.” – EVERSANA Employee
Are you interested in bringing compassion and empathy to work every day? If so, you’ll be in great company. Visit our careers page today to see where you’ll fit!