How to get involved?

Our partner EURORDIS will attend meetings of all Work Packages to keep track of their objectives and research activities, to understand the progress made and extract the most relevant aspects that can serve for the development of training materials for informing patients.

Based on the experience gained from the EURORDIS Summer School for patient advocates and from the European Patients’ Academy (EUPATI), a Toolbox will be developed to explain the different aspects of the research done: videos, written materials, webinars, presentations, and face-to-face training sessions. For other patients than those with rare diseases, the training materials (Toolbox) will be made available online on the project website and on the EUPATI website.

As most patients’ organisations in the therapeutic areas that will be dealt with in HTx will hold general assemblies or conferences, the proposed activities include attending their events to explain HTx, its findings and its potential.

When the HTx project will hold a stakeholders’ events, a fellowship programme will allow patients’ advocates to attend the event and to engage directly with the project team. When HTx will present its findings to other conferences of interest, the same fellowship programme will help dedicated patient advocates attend the conference to listen to the presentations and to interact with the audience.