The conference provided ample opportunity for national and EU associations working in the areas of chronic and rare diseases to meet with each other, share experiences and enhance their collaboration at EU level. Additionally, it is important to consider the strategic moment in which the conference was held: less than one month after the EU Summit on chronic Disease organized by the DG SANCO and two weeks before the European Elections.
The most pertinent issues discussed during the conference included: Ms. Janet Mifsud of Cartias Epilepsy Association mentioned the importance of m-Health, particularly it’s positioning amongst the first calls in Horizon 2020, the EU's largest research and innovation framework programme. However, Ms. Mifusd expressed concern about the fact that patient organisations were not properly involved in the development of this call. Furthermore, Ms. Audrey Craven, Secretary General of the European Federation of Neurological Association highlighted the need to develop further research incentives so as to encourage the private sector to undertake future activities.
Additionally, Mr. Brendan Barnes, Director of the Multilateral Organizations and Health Policy, European Federation of Pharmaceutical Industries and Associations (EFPIA) mentioned that the forthcoming calls under the Regulation of the Innovative Medicines Initiative (IMI2) public-private partnership, the joint undertaking between the European Union and European Federation of Pharmaceutical Industries and Associations (EFPIA) will play a central role in forging new models of research in the remit of neglected diseases but did not mention specific diseases.
It is important to note that the aforementioned suggestions put forward by the attendees will be considered and may be incorporated in the final version of a manifesto that will be produced and subscribed by the organizations involved in the conference and sent to the new MEPs in the coming weeks.