Rare diseases are isolating and difficult to manage. They’re also not as rare as people think, with more than 3 million rare disease (RD) patients in Spain alone. Sufferers typically find themselves without much support, and often without a proper diagnosis. So Alexion, AstraZeneca’s rare disease division, brought RD patients’ stories to the public. By partnering with seven different influencers, we spread these stories, making an impact.

All the materials to be used externally for a pharmaceutical company in Spain have to go through a specific review process before it goes out. This implies that all documents are uploaded to a tool called Promomats and the official approvers can review it online: Legal, Regulatory and Medical. Once they sign it off these can be used, never before. During this process it is created a code with a number and a date, and this should be included and visible in all materials.

There are more than 3 million RD patients in Spain, which has a population of 48 million people. That means 6 out of every 100 people you meet in Spain are suffering from a RD.

Doesn’t seem that rare, does it?

Despite the considerable number of people suffering from rare diseases, the community is practically invisible to the broader population. Even worse – innovative medicines and specialized treatments from doctors are too expensive to develop given how uncommon these diseases are.

The Spanish Ministry of Health, the regional health authorities and Farmaindustria (National Business Association of the Pharmaceutical Industry established in Spain, which groups most of the innovative pharmaceutical laboratories established in Spain) do not allow to make reference to prescription products in disease awareness campaigns.

In addition, the Law on Medicines and Health Products does not allow advertising in the media or social networks about prescription products.

The target audience is patients who can use the tool and create their own Identity Diagnosis but also general population in order to create awareness about rare diseases. As part of the communication plan we also had specific actions to target HCPs, payers and media outlets.

Situation:

43% of RD patients report having suffered discrimination due to their condition – in addition to pain caused by their disease. We don’t always trust the “rare” or different”.

The cause: a lack of knowledge about rare diseases, and a patronizing attitude towards illness. We just label these patients as ill and let their diseases define them. But they have dreams, hopes, and plans just like the rest of us.

Brief:

To use a beautiful exchange to help RD sufferers and help humanize their plight to the public.

Objectives:

To raise awareness around these patients’ right to have a meaningful life, and also bring actionable solutions forward to policymakers.

It typically takes four to ten years of uncertainty before RD patients have a diagnosis, and involves numerous tests and doctor visits.

So we created a social experiment where we invited several RD patients to “participate in a study” in the presence of an observer.

Once in consultation and after an initial set of the regular medical questions, the questions smoothy evolved into more personal ones: what their dreams were, the things that made them smile, their plans in life, the people they love, etc.

At the end of the consultation, the observer – who was actually Noah Higón, an RD patient that happens to be a poet – handed a very special diagnosis to the patient: The Identity Diagnosis, a poem featuring the first diagnosis revealing who they truly are as a person, not the disease they face.

When we first started working with RD patients, we discovered that not only do they feel invisible, but when they are noticed, it’s often for their disease – not for who they really are.

Armed with that insight, we wanted to let these patients know that they are more important than the disease that afflicts them. We set out to unlock the power of empathy, giving them to space to define themselves beyond their disease. We created a hero video that showed our social experiment, including the emotive and hopeful reactions of RD patients who saw themselves beyond their diagnosis.

We wanted our message all over the place. Allowing people to share their own Identity Diagnosis would guarantee an organic amplification and give RD patients an even greater voice.

Our hero film was the centrepiece of our website, 3millonesyanoesraro.com, and showed patients reading their identity diagnoses while viewing important moments in their lives.

The website also hosted our AI poet bot, and allowed users to easily share their Identity Diagnosis poems on their social networks.

Seven content creators, from popular Spanish journalists and family and lifestyle influencers, expanded the message to different types of audiences, encouraging them to join the initiative #MyIdentityIsNotRare.

We collaborated with two nationally broadcast podcasts, discussing personal stories about who these patients are beyond their illnesses.

Then, we launched a branded content campaign in large general media outlets including Mediaset, The New Barcelona Post, and El Mundo. This extended to audiences in the health sector such as iSanidad. Additionally, several health-focused media platforms such as IM Médico Hospitalario, Infosalus, Redografia Medico, and general media such as Pronto, La Razón, and ABC also discussed the initiative.

Our film was a success, driving widespread awareness and engagement:

Influencer Campaign:

380,659 impressions

17,191 engagements

1,943 clicks

Hero Film:

167,400 views

Podcast:

547,544 film views

8,410 engagements

Social Media Campaign:

5.3M+ impressions

1,849,238 film views (3.27% CTR)

Google Ads:

342,731 impressions

162,088 film views

925 URL clicks (.27% CTR)

Branded Content:

3.8M+ impressions

5,270 article readings

Interviews:

6.2M+ audience

Press Release:

2.6M+ audience