Share4Rare 2019 report Making a difference in rare diseases

Introduction from the Programme Manager

The power of Share4Rare lies in its community. The objective is clear: creating a platform where rare disease patients, caregivers and clinicians can find much-needed support, while contributing data to the research efforts taking place in the field. The platform was launched during 2019 and The Synergist provided the project team with ongoing advice on how to continuously improve it.

We have also dedicated our efforts to engage with patients in order to build patient communities in Share4Rare, because as more patients contribute to the project, the more Share4Rare will be able to help patients with amazing features like “Patients Like Me”, which can help undiagnosed patients find the fastest path to an accurate diagnosis, and hence to the appropriate treatments. This project has received funding from European Union’s Horizon 2020 programme.

Eric Blanchet Programme Manager

2019 Achievements

During 2019, a first version of the platform was released and the consortium began engaging with patients through one-to-one meetings, webinars, and conferences, as well as a diverse communication campaign. Following up the initial plan and integrating the feedback from partners and patients meant that improvements and new features were added throughout the year, always with the goal of delivering more value to patients and their caregivers.

To foster patient engagement and retain them in the platform, the Synergist has designed a“captology” plan that will be deployed in the general platform and also across four pilots dedicated to four specific conditions. Growing the number of patients in the Share4Rare platform is now crucial as the essence of the model is to enable patients to help other patients through contributing data to help research; deep analysis of the diseases and related phenotypes will ultimately help other patients get to the right diagnosis and find help from a community of patients with the same conditions.

Our 2020 Approach

In 2020, as the platform has been launched and our four pilots should support the creation of value for the patients, our collaboration will continue to engage with as many patients as possible. We will also provide our communication and product marketing expertise to drive and retain growing numbers of patients to the pilots and the general platform, offering value at every step of the way. These activities should also contribute to building the sustainability of the platform beyond 2020 and the end of the EU-funded period.

The Share4Rare Team

The Share4Rare Team consists of:

  • Nicholas Brooke Executive Director
  • Helena Harnik Synergist Programs Director
  • Eric Blanchet Operations Director
  • Jean-Christophe Capelle Financial Director
  • Roxana Radu Communications Manager
  • Gulwish Ahmed Communications Coordinator
  • Daniela Luzuriaga Ubilla Project Coordinator

Our Partners

“I have been collaborating with the Synergist for the past years, and we share a common view on the importance of collaborative work to make real social changes. We also share values, in terms of patient and citizen engagement, and the need to build projects and ideas with co-creation approach. I am sure we will continue collaborating in the future, as much is needed, and The Synergist is a great partner to move forward the social change.”

Anais Le Corvec Cliclab
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