One of the next steps on our journey is to engage with regulators to understand the process of approving drugs to be available to patients across Europe. Therefore, FSHD Europe organized a webinar with EMA (European Medicine Agency) to learn more about the role of patients in their approval process. It was an informative webinar, and we would like to thank the speaker, Maria Mavris (Patient Liaison, EMA) and all the patient representatives attending.
FSHD Europe is aiming to become part of the EMA network of eligible European organisations listed on its website and to be the first point of contact for involvement in EMA activities, as and when appropriate. One of the eligibility criteria is to have a European focus and representation, including EU/EEA* based office and membership covering at least 50% of all 27 EU Member States. FSHD Europe supports patient organisations from all European countries independent whether they are EU/EEA Member State or not. At this point we have 12 member organisations from 10 countries (of which 9 EU Member States).
* European Union (EU), European Economic Area (EEA)