Rare is exciting, until it isn't

We all like to think of ourselves as rare. Unique. Special. One-of-a-kind.

In the collector’s world, a 'rare find' garners excitement and intrigue. Wildlife photographers dream of that rare glimpse of an elusive bird species that might finally get them into a David Attenborough documentary. But it’s not so exciting when it comes to our health – that’s why Purple Agency are supporting Rare Disease Day 2023.

Rare…but not so rare

Imagine living with a disease that your GP may never have seen before and will probably never see again – one that affects fewer than 1 in 2,000 people. Some are so rare, they don’t even have a name.

Often genetic, rare diseases are frequently chronic, progressive and even life-threatening. There are over 300 million people living with one of more than 6,000 rare diseases worldwide. So, while they’re individually rare with their own set of symptoms and outcomes, they’re collectively common.

People that suffer with rare diseases often embark on a diagnostic odyssey, with countless doctor visits, unnecessary poking and prodding, and wrong diagnoses that could last over 4 years – and that’s just the tip of the iceberg. The process can be physically and mentally draining.

The real experts

It's hard to imagine that anyone who's faced the burden of a rare disease hasn't worried about “what if” scenarios or felt “adrift” at some point throughout their journey. Too many times when a rare diagnosis is made, patients are simply handed a one-page Google printout of the condition and told to go home. That’s why people with rare diseases, their families and friends, are often the real experts in these conditions. They research, lobby, organise and advocate, and fly the flag for awareness of a disease that GP’s may only see once in their career, often picking up the pieces when the wider society and healthcare profession let them down.

The rare disease community is highly engaged and in it for the long haul, and pharma companies will often partner with patient advocacy groups at the pre-clinical stages of drug development. These groups know what they need and what they don’t, and their opinion could make all the difference. They’re one of the few outlets that can be relied upon for credible information, understanding and support.

Elevating the voice of the rare disease community

Communication around a rare disease is about disease awareness and education – not brand promotion. It’s crucial to grab the attention of very busy policy makers, industry representatives and HCPs – to name a few, many of whom may never see a patient with the rare disease at hand. It’s all about elevating the voice of someone who hasn't been heard, as early as possible. This is where patient groups can have a real impact on clinical trials with recruitment, and where healthcare communications agencies have a key role to play by developing patient-facing materials that are updated regularly and specifically. With often long delays in diagnosis, people with rare diseases are eager to be kept up to date on trials, preliminary results and other developments.

Recognising rare diseases serves as a source of support for those affected by them. It can be reassuring to know that others understand what you’re going through and are willing to stand up for you.

One size never fits all

For rare diseases, patients’ experiences are extremely varied. These extra layers make rare disease communication a long game. Unlike other therapy areas, it’s more bespoke as it needs more tailoring to the individual. So much insight has to come from the patients themselves, which is where strong patient/pharma relationships make all the difference.

Expert patients and carers, clinicians, and payers all need more information, more often: which makes it paramount to deliver communications that make the most impact and actually work.

Let’s come together to show support for those living with rare disease, elevate their stories, and advocate for global health equity.

To learn more about Purple Health and our commitment to rare disease awareness, contact Elisia Cox at hello@purple.agency.