Action: Submit your photo to the EURORDIS Photo Award 2020!

Have you taken a photo that illustrates the challenges or joyful moments of living with a rare disease? Submit it to the EURORDIS Photo Award by 16 January! National Geographic photographer Marcus Bleasdale will shortlist five finalist photos that will be open to an online public vote in February. Prizes will be awarded to the winning photographer and runners-up.

Spread the word: call for proposals for research projects on rare diseases 

The European Joint Programme on Rare Diseases (EJP RD) has made a preliminary announcement about the upcoming 2020 call for proposals for pre-clinical research to develop effective therapies for rare diseases. A number of national and regional funding organisations will participate in the call, alongside the European Commission and the EJP-COFUND action, to provide the funding for the research projects that are selected. Spread the word and encourage researchers in your network to respond to the call! Patient organisations are also eligible to be partners in this call. If you have any questions or would like your organisation to participate please contact EJPRDcall@anr.fr.    

Have you carried out research or a project on rare diseases? Submit a poster abstract for ECRD 2020 Stockholm!

Spread the word – patient groups, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects are invited to submit a poster abstract for ECRD 2020 by 10 February in line with one of the 8 conference themes.

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First EURORDIS Leadership School face-to-face training takes place in Barcelona!

56 patient advocates took part in the first-ever edition of the EURORDIS Leadership School on Healthcare & Research, which included 20 webinars and a face-to-face training in Barcelona last week (see the participants here!). The Leadership School, a EURORDIS Open Academy training, aims to empower patient advocates to be valued partners in European Reference Networks. It provides capacity-building workshops for European Patient Advocacy Groups (ePAGs) on leadership, network management, healthcare and research.

Press release: EURORDIS urges EU Council to preserve a HTA legislation that best serves patients

EURORDIS has called on Member States of the EU to take off the table the proposal of the Presidency of the EU Council to withdraw Article 7 of the current proposal for European cooperation on health technology assessment (HTA). In a press release, EURORDIS urged EU Member States and their representatives attending the meeting of the Council Working Party in early December to consider the damage the withdrawal of Article 7 could do to patients’ access to innovative medicines and health technologies. Yann Le Cam, Chief Executive Officer of EURORDIS, said, “Better no EU HTA legislation than bad legislation.” Read more. Several national alliances are also preparing to take part in this advocacy effort at their national level. Please contact matteo.scarabelli@eurordis.org with any questions. 

Bron: Eurocordis