AGM 2019: farewell to our Secretary General, Nicola Bedlington and what lies ahead for EPF

On 13-14 April 2019, EPF members gathered in Brussels for EPF’s 16th Annual General Meeting. During the event, members of EPF’s Board and Secretariat reported on 2018 activities and gave an overview of our current and upcoming work for 2019-2020. The meeting also saw the election of new board members and the approval of four new member organisations.

EPF’s Annual General Meeting (AGM) has always played a key role in the democratic and governing process of the organisation. It approves the annual report and the financial report for 2018, and the budget and work plan for 2019. This AGM also saw the election of new Board members and voted to welcome three new members.

It was also our long-standing Secretary General Nicola Bedlington’s last AGM after 13 years of leadership. The entire membership and the Board thanked her warmly for being a truly inspirational and dedicated leader and for making EPF the successful organisation it is today: she will be missed. At the same time,  the team is looking forward to welcome incoming Executive Director Usman Khan, who will be officially joining the EPF Secretariat on 29 April.

New Board members and roles

This year, EPF membership elected one new Board member: Dimitrios Athanasiou (World Duchenne Organisation). They also reconfirmed EPF President Marco Greco (European Federation of Crohn's and Ulcerative Colitis Associations), Radu Ganescu (COPAC, Romania) and Hilkka Kärkkäinen (GAMIAN-Europe) as Board Members. Following the elections, the roles of the new Board resulted as follows – Radu Ganescu, who has served two mandates as Treasurer, now takes over as Vice President, whilst Elisabeth Kasilingam (European Multiple Sclerosis Platform - EMSP) was elected Treasurer, and Marco Greco’s position as President was reconfirmed for the next mandate.

New EPF members

EPF is also delighted to welcome three new full members and one associate member to the EPF family! We look forward to further strengthening our representation by adding the voice of several countries and diseases to EPF’s, and to that end warmly welcome the following organisations to our membership:

Full membership:

World Duchenne Organisation

Cystic Fibrosis Europe

Federation of European Scleroderma Associations (FESCA)

Associate membership:

Patiëntenfederatie Nederland

EPF Youth Group – the young patients’ perspective

Two members of the EPF Youth Group, Jana Popova and Martin Mastrotto, presented the latest updates on the Youth Group WAYS (Work and Youth Strategy) project, revealing the research timeline and other information. WAYS is a one-year initiative set up by the Youth Group, aimed at raising awareness, achieving equal access to job opportunities for young people with chronic conditions and non-discrimination on the job market.

They also provided a sneak peek of the next working topic of the Youth Group, which will be sexual health and education. They mentioned the involvement of the Group in the third edition of the Summer Training Course for Young Patient Advocates, where they will play a role in developing the agenda of the event as well as the follow-up stage. Another important highlight of the AGM 2019 is that the Group received the right to vote during EPF Board meetings. The presence of a Youth Group representative on EPF’s Board, now with voting rights, is a concrete demonstration of our commitment to integrate the young patients’ voice in the governance of the organisation.

EPF Leadership meeting: Shaping EPF’s post-EU Elections strategy in a new political era

On the second day of the AGM, members had the opportunity to shape EPF’s strategy and set the agenda, by taking into account various scenarios, according to the possible outcomes of the upcoming European elections in May 2019.

The topics discussed during this interactive session included understanding when and why EPF should be more proactive or reactive, types of support which should be offered to members in the new political scenario, EPF’s long-term organisational and policy priorities, and key areas for action.

We are truly grateful to all members who took part in our AGM and helped us develop more ways to strengthen the pan-European patient community, including improving access to patient-centred care and make sure issues that matter to patients become an active part of the post-elections EU agenda. We look forward to seeing you again next year, or sooner!