The Rare Disease Patient – Informed, Active, Powerful

For the last decade, I’ve been deeply involved with brands that treat rare diseases. Interestingly, a unique aspect of the rare disease space is the important role played by patients and their advocates. In  the rare world, patients stand out as the voices and faces of the conditions much more so than in health conditions affecting a broader population. Understanding this offers a big opportunity for brands to gain stronger insights, tell better stories, and most important, be successful in improving the lives of people who really need it. Here are a few things that make rare disease patients unique.

They’re experts

Well not all of them, but even the most disengaged rare disease patient (and that is not the norm), knows a heap more than your typical patient. This is because many patients with a rare condition have spent a painfully long time getting to a diagnosis, in some cases more than a decade. The search for a doctor who understands their condition is often not an easy task, so these patients have had no choice but to become their own advocates. The amount of reading, talking, and research has enabled them to become well versed and knowledgeable about details related to their conditions and they medications that treat them.

Social media is a key source of support, information, and community

Once patients know what they have and how to treat it, they become very well versed in the condition, the treatment options, the process of getting treatment, the side effects, tips and hacks. There is a wealth of information shared amongst people with a common rare condition. You name it, you can find it on social. The painful stories, the grueling day-to-day, and the heartfelt advice.  They truly care about one another, and social media will reveal the most uplifting and supportive advice you can imagine.

Authenticity and trust are paramount

While patients with conditions that only affect a small number of people usually recognize that they need the industry to drive better treatments and better care, they don’t want to feel like a faceless number. If you can’t show that what you’re doing elevates the needs of the condition and the community, then you may not only get shut out of the discussion, but the community will know, and your reputation can suffer. So, if you’re going to talk to a rare disease patient on behalf of a product, then it better be straight up and real. As a company, if you say you’re going to do something or support them in some way, then it’s expected that you do it. They won’t forget if you mess up.

They have strength in numbers

Patient advocacy groups and associations are involved and influential in rare disease. These groups are considered a trusted source of unbiased information for rare disease patients and their families. Often there is very solid engagement with educational events and activities being offered by the patient associations.  There is a trust here that the patients value and the associations protect. When the association gets behind a company or a cause, the patients will take note.

They look out for one another

Interestingly, their commitment to better treatment and support goes beyond what they want for themselves, but for the benefit of the community. One reason rare disease patients seem willing to share is because they know what it means to suffer and they want to change things for the next generation of people fighting their condition. They look to other patients and caregivers for the real-world information and want to ensure they pass on what they’ve experienced and learned to help others coming up behind them.

For these reasons and more, working in rare disease is quite rewarding. There is so much to learn about these unique and lesser known conditions, and an opportunity to partner with uncommonly well-informed and active patients to make this small and specialized corner of healthcare better.