To be rare is to be unique, specific, one-of-a-kind. And yet, there are approximately 10,000 rare diseases out there, estimated to impact between 25 and 30 million Americans. That means 1 in 10 Americans are affected—making rare diseases all too common. In fact, you probably know someone who lives with a rare condition.
Rare diseases require rare knowledge, attention, and empathy from cutting-edge industry leaders, dedicated healthcare providers, engaged and vocal patients, supportive families and caregivers, and teams of researchers and advocates.
At Boundless Life Sciences, we have extensive experience in this highly specialized space. Our team of skilled account managers, creatives, copy supervisors, and project managers creates campaigns that inspire healthcare providers, patients, and caregivers to become rare advocates. Our passion comes from years of collaboration with industry leaders on the front lines of new and exciting treatment options that offer hope to so many.
Recently, our team had the opportunity to speak with people living with Friedreich ataxia (FA), a condition affecting approximately 5,000 people in the United States that causes progressive loss of mobility and coordination. We got to hear firsthand how their diagnosis and treatment affected their lives and their outlook on the future. Although there is currently no cure for FA, the people we spoke with don’t let their diagnosis dictate their destiny. They face life with determination and optimism, seizing each day with a sense of ambition and drive that left an emotional impact on each and every member of our team. These conversations were extremely powerful in part because we got to know the patients we’re working for as individuals, with hobbies and interests and senses of humor, rather than as a monolithic target market. Some of our team members even reached out on social media to stay in touch with the people we interviewed, who had come to feel like friends.
Since the Orphan Drug Act was passed in 1983, facilitating the development of pharmaceuticals for which there is only a small group of potential patients, there have been a lot more marketing dollars for rare disease treatments. But that’s not why we do what we do. At Boundless, our passion for connecting patients with rare conditions and the treatments that improve their lives is personal and heartfelt. That’s why so many of our team members in our Chicago, Austin, and New Jersey offices are participating in their local Running for Rare event sponsored by the National Organization for Rare Disorders (NORD®). Even those who don’t live in these areas are donating to support the effort. For us, it’s an opportunity to build and foster strong relationships with the rare community and support local advocates on raising awareness for rare diseases.
So often in the healthcare marketing industry, the team only gets to know patients as bullet points in a strategy deck. At Boundless, we go further. We find ways to connect with people as individuals to learn what truly makes them rare—and it’s always more than their diagnosis.
If you’re ready to join us in our ongoing efforts to connect with people living with rare conditions, consider supporting our Running for Rare team. And if you work in the rare disease space, reach out to start a conversation about how we can collaborate.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Visit their website at https://rarediseases.org.
