The more people a disease affects, directly or indirectly, the more attention the disease tends to get. Look no further than COVID for proof, but you’ll find no shortage of other examples.
That’s why Rare Disease Day is so important. Rather than singling out any infrequently occurring condition, the occasion celebrates the communities and survivors of rare diseases. This group spotlight is the biggest one they receive.
A rare disease is defined as one that occurs among fewer than one in every 2,000 people. When viewed collectively, the number of people with rare diseases is about 300 million worldwide. That represents 3.9% to 5% of the global population. Diseases of the genetic variety account for 72% of the total. when fewer than 1 in 2,000 people are afflicted.
How does the saying go … common sense isn’t common? Well, by the same token, rare disease aren’t that rare. Chances are you’ve met someone with a rare disease unless you’re even more of a recluse than I am, and a rare disease infiltrated even my tight circle.
Our friend
My wife’s BFF lost her daughter in 2013 to Rett Syndrome, a neurodevelopmental disorder that affects brain development. Only one in 12,000 girls are afflicted, and it’s rarely seen in boys. Her 26th birthday would have been yesterday.
She was very undersized with minimal mobility (our friend carried her everywhere, which got her seriously ripped). Think of Rett as living in a body that the sufferer cannot command. Still, the light in her eyes made me realize she felt every bit of joy that any of us “normies” do, if not more. She loved her swing.
Interestingly enough, I met this radiant young lady well before I met my wife or our friend. I was a cub newspaper reporter assigned a “color piece” for a local marathon. That means finding an unusual element for coverage to complement the sports angle and writing a couple hundred words. The girl’s dad ran in the race, pushing their daughter across the finish line in a stroller. I knew there was a story there, so I interviewed Dad. Breathlessly, he introduced me to his daughter and Rett Syndrome. Their story was so moving that my editors bumped it above the fold. I take zero credit. Sometimes the story writes itself.
Our friend is a talented artist. She paints a lot of natural scenes but also paints beautiful portraits of her late daughter as catharsis. Parents are never supposed to bury their kids. As a father, I can’t imagine that pain. The best we can do is offer our support – not just on anniversary days.
(Inter)national _______ Day fatigue
In any industry, there seem to be more nationally recognized days than days in a year. I’d be lying if I said the overload doesn’t make me a bit jaded. It’s not that any of these recognition days are unimportant. But too often, they tend to blur together in a marketer’s content calendar soup – sort of like Alphabet Soup, but with hashtags and CTAs. We know our audiences and the issues that are important to them. However, content for content’s sake is never a winning recipe, regardless of your industry or best intentions.
I wanted to do Rare Disease Day justice, and I hope I have so far. By sharing my indirect personal experience, I forced myself to think long and hard about the subject and how it’s affected our loved ones and me. It made it more real and made me want to trumpet the cause as best I could.
Rare disease success story in the UK
There are more than 8,000 rare diseases that, collectively, affect 1 in 17 people worldwide. While those aren’t small numbers, each disease’s relatively low health burden renders them low on the public health agenda.
Still, there is important work being done. London-based Mendelian formed a team in 2015 comprising a neurologist, computer scientists, and seasoned entrepreneurs. Their goal: to support physicians in identifying rare diseases sooner. Their MendelScan solution extracts signs and symptoms from EHRs across a patient population. It’s the first NHS-integrated tool build specifically to support primary care diagnosis of rare disease.
On Rare Disease Day 2022, England’s leading public health bodies published the nation’s first Rare Disease Action Plan. The plan strongly focuses on digital tools and virtual consultations to help people with rare diseases benefit from faster diagnosis and improved access to treatment.
Momentum is shifting. Once considered peripheral, the market for so-called “orphan drugs” that treat rare diseases is growing at twice the pace of the non-orphan market. By 2026, orphans are expected to account for 20% of all prescription drug sales and nearly one-third of the global drug pipeline’s value.
What causes are important to your organization? Our life sciences marketing and PR agency would love to discuss how your organization can be a better ally by integrating support for advocacy groups into your brand messaging and direct more attention to their work and yours.