Rare diseases affect more than 300 million people in the world. However, these diseases are understudied, poorly supported, and most do not have a therapeutic solution. As such, they represent a major public health problem. To address this issue, Fondation IPSEN, a non-profit foundation, promotes awareness campaigns on rare diseases as well as their early diagnosis.

Social media to share the foundation’s activities

To communicate their efforts, social networks are essential. Whether on Facebook, Instagram or LinkedIn, Fondation IPSEN entrusted Agent Majeur with its community management since January 2023. The reasons behind this choice? Relying on a company specialized in scientific communication makes it possible for Fondation IPSEN to increase their visibility, while freeing up time for its teams to carry out core initiatives.

Created under the aegis of Fondation de France, Fondation IPSEN has more than 40 years of experience in health-related scientific dissemination and knowledge-sharing. Today, the foundation wishes to focus on rare diseases and to be recognized as a key player in this field.

The communication objectives

Thus, Fondation IPSEN is carrying out communication actions for the general public and the scientific community on three main topics:

• the diagnosis of rare diseases;
• therapeutic options;
• support actions for patients.

Fondation IPSEN produces podcasts, webinars and books on these subjects, all available for free. Some of these contents are more particularly aimed for children or teenagers, because a large number of rare diseases affect children under 15 years.

Patients, caregivers, researchers…to reach a wide audience, the foundation is counting on social media. Our agency is in charge of writing posts and creating visuals which will highlight the efforts of the foundation and their partners.

A professional and creative community management

To communicate on social media, the text is important. It must deliver a clear message while being concise, informative and attractive. And putting this text in image is even better. Indeed, illustrated posts are more effective because they catch the eye and draw attention. Furthermore, each network has its own codes which need to be mastered to create compelling content.

Thanks to our expertise in all these aspects, we write posts for social media several times per week. To do so, we have set up a bimonthly editorial planning, which can be adjusted according to the latest news of the foundation. Since Fondation IPSEN targets an international audience, we write these posts in French or in English depending on their needs.

To create illustrations, we rely on the visual identity of Fondation IPSEN. We chose to differentiate its productions: green for posts on books, orange for podcasts, yellow for videos. This little trick makes it possible for internet users to identify more easily the type of action discussed in the post.

Results on LinkedIn, Facebook and Instagram

After a year of managing our community on Facebook, LinkedIn and Instagram, we see positive outcomes. Subscribers have increased across all platforms, along with visits and engagement rates. Instagram, in particular, has seen a remarkable 220% growth in followers.

With enthusiasm, we continue our mission, promoting exciting news such as the launch of a new podcast on rare disease advocacy produced by Science journal. Additionally, we have participated in the World Orphan Drug Congress. In February, we will celebrate “Rare Disease Day” in collaboration with the patient association Eurordis. Stay tuned for updates on your favorite network!

23/01/2024