Do we need to rebrand rare diseases? « Rare Disease Blogs.

October 5th, 2011

Do we need to rebrand rare diseases?

I came home late from London last night. We’d just had a brainstorm with a group of friends to think about how to build a strong rare disease movement in the UK. As you’ll see from my previous posts, I’m convinced that more can be done to create a mass social movement for rare diseases on the same scale as that for cancer or heart disease. Here’s why:

Rare diseases affect 3.5m people in the UK (see http://www.raredisease.org.uk/). If you include their family members (approximately four people per nuclear family), that means 14 million people have direct experience of a family member living with a rare disease. I’ll repeat that:
14 million people.

The total UK population is just under 60 million people. This means that 25% of the UK population has direct experience of a close family member living with a rare disease.

That’s one in four.

If you include grand parents, children, close cousins and close friends, the figure climbs higher, maybe even to half the UK population, or even more.

So why is there no mass movement? Where are the millions of mums, dads, brothers, sisters, sons and daughters, cousins, friends, colleagues, grand-mothers and grand-fathers of people with rare diseases? Why aren’t they on the streets, shouting about the injustices faced by their suffering family members and friends?
Maybe they’re too tired and exhausted from caring for them? Maybe they’re discouraged and don’t believe they can make a difference? Or maybe they think the disease is too rare, so why should anybody care?
I’ve often told people that my two boys have a rare disease (Alkaptonuria, or Black Bone Disease).

Generally, people are sympathetic. I can see their sorry faces. ‘That’s a shame. I’m glad that’s not me,’ I can hear them think.

Others are more hostile. One family friend once said, ‘Who cares about your kids’ rare disease. There are more important things to worry about in the world.’

Unfortunately, I believe his reaction is common – it’s just that most people won’t say it out loud. The term ‘rare disease’ doesn’t work well as a way of raising awareness and generating support. When faced with the evil of cancer or the suddenness of heart disease, rare diseases seem more like a curiosity, something that isn’t widespread and that isn’t relevant to most people. There’s always an uphill struggle to explaining that rare diseases are common. But even then, most people don’t feel all that concerned.

So should we rebrand rare diseases? Should we find a term that challenges people? That makes them feel directly concerned? That makes them feel like they need to take action urgently?

This is a tough one. And I don’t pretend to have a solution. That’s why I’m writing this blog post – to generate some thinking. Last night, our brainstorm, which included a global branding expert, the head of a growing rare disease foundation, and the director of digital media in a major health foundation, looked at the options:

• Rare diseases: an accurate description, but makes people think that it doesn’t affect them. It reduces engagement.
• Orphan diseases: symbolic, but creates confusion in the public’s mind: could be diseases affecting orphans in Africa.
• Genetic diseases: could work, although few members of the public understand the term ‘genetics’. Sounds technical, scientific. Also, some genetic diseases are not rare diseases.
• Extreme diseases: captures the imagination and makes you wonder what it’s about. Many rare diseases do present themselves as extreme versions of common diseases (Alkaptonuria is an extreme form of osteoarthritis).  But this term can sound too sensationalist. And many common diseases are also extreme in their manifestations.
• Inherited diseases: easier to understand for the average member of the public. Everyone knows about inheritance. It engages them, makes them think ‘could I have an inherited disease?’. But some rare diseases aren’t inherited, and some common diseases have inheritance factors.

I’d love to hear what others think. In the end, maybe we should stick to the term rare diseases. Maybe we should accept that it’s not perfect, but that it’s the best we have at the moment. Or maybe there’s a better way out there? A way that will immediately grab the public’s attention, make them realise we need to take action, and kickstart a mass movement on a scale we’ve never seen before.
Email me on nick@akusociety.org if you’d like to discuss this further.

Do we need to rebrand rare diseases? « Rare Disease Blogs.

Nick Sireau

Dr Nicolas Sireau is Chairman of the AKU Society, a medical charity that works in partnership with the Royal Liverpool University Hospital to find a cure for AKU, an orphan disease affecting his two sons. He is a founding member of the international findAKUre coalition, which brings together leading research institutions, biotech companies and patient groups from across Europe and North America in order to find a cure to AKU. He is a former Director of GenSeq, a bioinformatics company. He is a fellow of the Ashoka Fellowship of Social Entrepreneurs and of the Royal Society of Arts. Dr Sireau’s previous career was in international development, where he set up SolarAid, an award-winning social enterprise bringing solar power to Africa, and wrote books on international aid.