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Rare and ultrarare diseases are not only difficult to live with and diagnose, but they are also complicated to treat. Companies that launch therapeutics in this area are bold and their branding should reflect that.
While each country has its own official definition of a rare disease, in the United States, a rare disease is classified as a condition that affects fewer than 200,000 people. According to the National Institutes of Health, there may be as many as 7000 rare diseases. Of those, 95% have no treatment, according to the National Organization for Rare Disorders. So, when a new therapeutic emerges, it can garner a lot of attention.
In a sea of promises, a manufacturer must take steps to stand out from the competition to deliver their life-altering treatment to the patients who need them the most.
Be an early leader
Helping to shape the future of the indication is an important early step, especially for first-in-class products. Take a step back from the actual therapeutic and look at the disease from a holistic point of view.
How is it currently being positioned? What is the current terminology being used to describe it, and how consistent is it across the board? Is there a better way to approach it? What does a successful outcome look like, and how does it impact the person diagnosed with the disease and their care partners? What are the pain points for healthcare practitioners?
Doing this creates an opportunity for early innovation and understanding while also building consistency across the category. If you can better define and refine your category from the start, it will pay off tenfold during the life cycle of your product.
It’s never too early to start partnering with those impacted by the disease, including patients, care partners, advocacy organizations, and healthcare practitioners. Find them, talk with them, listen to them, learn from them, and work alongside them.
Collaborating with advocacy organizations right from the very beginning can uncover beneficial insights and knowledge that will not just set a brand apart but could also be the difference between getting someone access to a lifesaving therapy or not.
It also begins to build trust. Given the typically high treatment cost and small patient population for rare diseases, establishing trust early on is critical because they could turn into your biggest advocates.
Put a stake in the ground
Researching, developing, testing, and commercializing a treatment for a rare or ultrarare disease is usually personal to those who take it on. Companies that take the leap should be recognized for tackling such an important task.
Put a stake in the ground and own every aspect of the therapeutic category.
Don’t just be an expert in the field—be the number one expert in the field. Be the leader of the therapeutic category, and don’t budge from that position. Every aspect of the brand, from its name to the way it is presented to healthcare practitioners, should reflect that boldness.
Brannon Cashion and Vince Budd are managing partners at Leaderboard Branding, a Fingerpaint company. Leaderboard Branding is a global naming and branding firm that supports biopharma clients in the early phases of clinical development. Brannon and Vince may be reached at firstname.lastname@example.org and email@example.com.