People with rare diseases step forward in awareness campaign

People with little-known conditions and diseases are the focus of pharma company Takeda's 'I am Number 17' campaign to raise awareness that one in 17 Britons will be affected by a rare condition.

The 'I Am Number 17' campaign was devised to raise awareness of people with rare diseases
The 'I Am Number 17' campaign was devised to raise awareness of people with rare diseases

The campaign, which has been devised for Takeda by Hill+Knowlton’s healthcare team, is backed by 13 patients' charities, ranging from The Haemophilia Society to Genetic Disorders UK.

It uses 17 case studies of individuals, described as 'changemakers', who talk about living with a rare disease or condition, or caring for a child with one.


Their stories of living with conditions such as tuberous sclerosis, hereditary angioedema, and Ehlers-Danlos syndrome have been used to inspire a series of artworks that were exhibited at the gallery@oxo in London last week, after an exhibition preview was held to mark the launch of the campaign. 

The campaign aims to increase understanding of what it's like to live with a rare condition and to highlight patients' care and support needs.

Pharma perspective

Jon Neal, managing director, Takeda UK & Ireland, said: "'I am Number 17' is a community campaign at its heart. It's also the first time that Takeda UK, together with a large collective of rare-disease patient organisations representing multiple rare conditions, are working together on one initiative."

He added: "Our joint goal is to increase understanding of what it's like to live with a rare disease and show that collectively, rare diseases aren’t always that rare."

A rare disease is defined by the European Union as one that affects less than five in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases, with new ones emerging every week.

The 17 case studies are being used to promote the campaign on social media, along with artists and patient groups using the hashtag #IAmNumber17.

This strategy was chosen because Takeda believes the campaign's messages are authentic and more likely to be shared coming from people who are part of the campaign, rather than the pharma firm funding it.

The media strategy was to secure a high-profile TV piece to mark the campaign's launch, which was achieved with an item on Sky News featuring Jon Neal, managing director, Takeda UK & Ireland, and Jack Bridge, a former Paralympic swimmer who has haemophilia A.

Media relations has since focused on regional and local media relevant to the 17 case studies, resulting in coverage on ITV Granada, BBC North and ITV Wales, as well as various regional radio stations and print titles.

Attendances at last week's exhibition, along with the use of the #IAmNumber17 hashtag and social engagement, and traffic to the campaign website will be among the metrics used to judge the campaign's effectiveness.

More than 500 people visited the art exhibition, and there have already been almost 200 social-media posts across Facebook, Instagram, Twitter, and LinkedIn since the campaign launched. These have an average engagement rate of 1.89 per cent and a potential reach of 618,000 in total.

Hill+Knowlton hopes the launch marks the start of a long-running campaign highlighting the prevalence of rare diseases in the UK, and the experiences of those affected by them. The agency is also considering taking the artworks on a roadshow around the country, visiting the home towns of the 17 case studies' subjects.

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