Building the rare disease movement – a discussion at OxfordJam

I’m writing this on the coach back to Cambridge after our session on building the rare disease movement at OxfordJam. It was a good discussion, with representatives from industry, Rare Disease UK, patient groups, a venture capitalist interested in orphan diseases, and other interested parties.

We looked at how we can learn from social movement theory to build awareness about rare diseases in the UK. We looked at what we can learn from the Make Poverty History campaign of 2005, where 540 NGOs got together to mobilise 15m people in the UK to call the G8 to take action on global poverty.

Make Poverty History created a strong brand name around the movement. It mobilised significant resources and created a sense of collective identity. It defined the frame around which activists could mobilise by highlighting international debt, lack of aid and problems with unjust international trade as the main causes of global poverty. This gave everyone an interpretive frame through which to understand the issues and call for action. It organised a massive march, with 250,000 people gathering in Edinburgh just before the G8 meeting and Live8 taking place in London and around the world. It enlisted hundreds of celebrities to get media attention.

We need a Make Poverty History for rare diseases. We could even call it Make Rare Diseases History. The rare disease sector is definitely moving forward, which is excellent. We need to accelerate that process. Fast. This could mean changing public perceptions about rare diseases by doing an annual march for rare diseases, as they do in France. We could search for reputable, reliable celebrities with a personal link to rare diseases who could act as spokespeople for the movement.

We discussed at the OxfordJam session the need for significant access to funding for the patient movement. Ideas were shared about how to mobilise philanthropy and how raising funds for the whole sector ends up benefiting everyone, not just individual patient groups. For instance, we could create a fund that specifically raises and distributes money to rare disease patient groups – a bit like Fondation Groupama in France.

The rare disease sector needs to build on the success of Rare Disease Day and widen its appeal. It needs to encourage all the patient groups to reach out to their members and make them feel part of the wider rare disease community. This may need an extended communications campaign, and we could approach some of the big marketing firms for pro bono support.

We also debated how to develop new models of social entrepreneurship for rare diseases. One of our big problems is the lack of sharing of knowledge and ideas about the challenges we all face, such as raising funds, doing drug development, creating partnerships, or dealing with regulatory hurdles. One participant argued that we need a new way of thinking that is about sharing first and competition second.

I definitely agree. That’s why I set up this blog as a guide for rare disease patient groups. But I also think that we need to look at new models that bridge the gap between non-profit patient groups and for-profit industry groups – potentially looking for business models inspired by the social enterprise movement, with its hybrid models that tackle market failure.

Building a rare disease movement

It’s increasingly clear to me that we will only succeed to find treatments for a significant number of rare diseases if we build a global movement, led by patients and their families. France is the best example of this. Nearly three decades ago, the patient movement there set up the Telethon, the annual fundraising event that brings in nearly 100m euros a year in donations through a 30-hour TV programme – a bit like Red Nose Day in the UK, but for rare diseases.

The Telethon has changed the rare disease landscape in France. Everyone there has heard of the term ‘orphan disease’, unlike in the UK, where the majority of the population still think it’s a disease that affects orphans. I wrote a blog about this on Rare Disease Blogs a few weeks ago, where I looked at what sociology can teach us about how to build a rare disease movement.

In the UK, we have an excellent lobbying platform called Rare Disease UK. Led by the Genetic Alliance UK, it’s a wide alliance of patient groups and industry pushing for a national plan on rare diseases. On Rare Disease Day it published an excellent report about ‘A Vision for a UK Rare Disease Strategy‘. That’s fantastic work and much needed.

The challenge we face is that without a strong public movement in favour of rare diseases – similar to what we’re seeing in France – it will be difficult to move rare diseases further up the government’s agenda. At the moment, the government is saying there will be a national strategy in 2013 – that’s good, but it’s too far away. We need one earlier.

If you’re interested in discussing further how we can build a rare disease movement that engages with the public and uses new techniques to gather support, then come to our session on rare diseases at the OxfordJam conference on Wednesday 30 March at 1pm in Oxford.