Date: Wednesday, 24th July 2024
Time: 03:00 p.m. - 04:30 p.m. (CET)
Location: online
Language: English
EURORDIS invites you to a patient partnership webinar concerning disease specific measures in unlocking the full ERN potential in July.
In the last decade, recognition and diagnosis of rare diseases have increased leading to a substantial accumulation of knowledge among specialized clinical teams and centers across Europe. This is evident in the European Reference Networks (ERN) linking over 1,600 clinical teams and more tham 300 specialized hospitals.
This potential and collective expertise has to be fully unlocked and should be used to imporve diagnosis, care and treatment. Developing disease-specific measures through a collaborative approach is crucial.
In this webinar, examples of this measures, their development process and the pivotal role of patient representatives as well as the benefits of these networks will be presented.
Speakers are Tanja Wlodkowski (ERN ERKNet), Faisal Ahmed (Endo-ERN), Ana Priego Zurita (EuRREB (EuRRECa and EuRRBONE) Registry) and Johan de Graaf (Endo-ERN ePAG).
➡️ To register for the Patient Partnership Webinar, click here.
➡️ For further information, click here.
