The rare disease community?suffers?from?low awareness and?a lack of prioritisation.?Developing innovative treatments?for rare?diseases?is?challenging and patients face barriers to access,?enduring lengthy waits to receive a?diagnosis.??

Takeda wanted an original campaign to raise awareness?of these?challenges with key?UK?stakeholders – including the public, policymakers, and healthcare professionals – so they better understood the issue and were inspired to act.??

As the subject of Takeda’s awareness efforts covered the entire group of rare diseases, several conditions aren’t covered by the company’s medicines. This openness meant that we could engage the entire community.

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Our key objectives were to:?

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Educate the public, mobilising decisionmakers;???

Build commitment among policymakers on the challenges associated with rare diseases, especially in relation to patient access to medicines;

Create a strong community of clinical and patient advocates?to?campaign for equality on access to rare disease medicines.

At the heart of our creative idea was a very simple insight: 1 in 17 people in the UK are impacted by rare diseases, either through having one themselves or knowing someone who does. To help the public understand the scale of this issue, with its different and disparate effects, we sought to bring this number to life. We identified 17 people living with rare diseases with powerful stories to tell about the patient experience.?

We then looked to the medium of art to help our target audience relate to their perspectives. The intention was for each of our stakeholders to react in their own personal way to the work, rather than simply being presented with a difficult and abstract concept.

Our changemakers were paired with artists, collaborating to create work that reflected their patient experience. The final pieces of artwork were incredibly powerful, delivered through a mix of media.

Our approach was formulated from our key insight that 1 in 17 people in the UK will be affected by a rare disease at some point in their lives, making them less rare than you might think.?

This presented us with an opportunity to powerfully demonstrate how close to home the issue can be, educating our target audience of the public, healthcare professionals, and policymakers on the realities of patient life.

To?ensure the campaign was community-led and?useful,?our primary strategy was igniting a grassroots movement. We?identified and partnered with an exceptional 13 leading UK rare disease patient organisations, including - Ehlers Danlos Society, Gauchers Association, Genetic Alliance UK, Genetic Disorders UK, Haemophilia Society, and Sickle Cell Society – and 17 advocates as our campaign spokespeople.

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We then focused on?grasstops, promoting the campaign to individuals with real power to inform policy and affect change at the highest

We launched the changemaker’s artwork at an exclusive event at the Oxo Gallery on 22nd?January 2020 to great success.?All the changemakers and artists attended, including several policymakers.

The gallery?was then open to the public for free from 23–25?January,?with 600 attendees.?

As our changemakers represented different conditions and locations across the UK, they were empowered to speak on a local level to media and regional groups. Their experiences resonated across audiences, resulting in an extraordinary response from industry and regulatory bodies, health communities, and the independent pharmaceutical body, ABPI.????

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In?November 2020, we launched?Phase Two of the campaign. Having pivoted from our original plan for a regional tour of the exhibition in the face of the pandemic, we worked with our changemakers to go completely virtual. The result was?17 weeks of brand-new content, with each week dedicated to a specific?advocate.

Measuring against our key objectives, we exceeded the brief’s expectations. The campaign’s reach was particularly strong, maximising our ability to educate the public on the issue:????

59 broadcast pieces with a potential reach of 4m+?

National and regional press reach of?12m+??

6,674 webpage visits in the first two weeks of the campaign, linking through to the patient groups with a CTA to share support.

Our coverage?enabled us to continue building a strong community of clinical and patient advocates.

639 social posts using hashtag (no paid spend)

5.31k?organic social engagements????

49 people sharing their own experiences of living with a rare disease????

Engagement rate of 1.21%?

1.31m?potential reach????

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To date, Phase Two has received an additional 10,939 website?visits, inspired 1,124 social posts of support (1.87m reach), and featured?on BBC?London?with a potential audience reach of 5.5m.

Our ambition to drive recognition and commitment was achieved, as we improved understanding among political stakeholders and increased willingness to engage with our organisations and their issues.

Our advocates were given platforms and became part of a community effort that was not limited to a single disease; a particularly powerful aspect to?one changemaker,?David,?who is?the?only person in the UK to suffer from his?rare condition. The support and involvement of disparate patient groups would not have been possible for a campaign organised with a brand protecting vested interests. Far from being a one-off event, the campaign will be a long-term movement.