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The story

The story

Share4Rare is a European project led by la Fundació Sant Joan de Déu. This European project is meant to create an online platform for patients with rare diseases and their families and carers from all around the world. The main objective of this project is to connect patients and boost research in rare diseases and our challenge was to create a communication campaign to reach all these families around the globe, make them aware of this promising project and encourage them to participate in it.

From the very beginning, this project moved us. We wanted to communicate something emotional and true, positive and inspiring. We, along with la Fundació Sant Joan de Déu, wanted to communicate from the bright side of these diseases but taking into account that families are facing sometimes terrible situations. We had the luck to meet the families involved in the project and finally Ingrid, the great inspiration that became the centre of the Share4Rare communication campaign.

The claim for this campaign was “Let’s make rare extraordinary”. This claim encompasses all the values we wanted to transmit to the audience, rare is “extra-ordinary” and therefore out of the ordinary (with the good and the bad that comes with it), but also, let’s work together to make them even rarer.

Ingrid is a girl dealing with a rare cancer, she has an incredible personality and life story and became the muse for this project. Rare diseases are diseases that affect a small number of people compared to the general population and specific issues are raised with their rarity. In Europe, a disease is considered to be rare when it affects 1 person per 2000. This is why patients with rare diseases sometimes have to deal with isolation and lack of awareness of their diseases.

The complexity of this communication campaign was due to the small number of patients with rare diseases and the great variety among them, from demographics to language or culture. The creative solution was to involve the general public in this communication campaign and ask them to help us spread the word to reach people suffering from rare diseases. This was also essential to raise awareness about rare diseases. We developed a communication plan and a digital strategy for the online platform created within this European project. 

The impact of the project was dependent on the reach of the platform, and thus we were involved in the project as communication consultants. We performed an exhaustive analysis of the project communication existing channels, including aspects such as user experience, copy, design, and social media. We developed a communication style guide to maintain a consistent voice for the project and to make it stand out and communicate about this very sensitive issue in an adequate and effective manner. Also to make sure all partners were on the same page and sharing the same communication and exploitation goals.