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EPF’s Annual General Meeting 2020

On 25 April 2020, EPF Members gathered online for the 17th Annual General Meeting. This was the first ever virtual AGM for EPF, adapting to the current COVID-19 circumstances while upholding fundamental governance standards for EPF and its members. During the event, members of EPF’s Board and Secretariat reported on 2019 activities and gave an overview of our current and upcoming work for 2020-2021. The event also saw the election of new board members, the approval of three new full member organisations, and the first ever election of members for the newly created EPF Ethics Committee.

EPF’s Annual General Meeting (AGM) has always played a key role in the democratic and governing process of the organisation. The annual report and the financial report for 2019, as well as the budget and work plan for 2020 were all approved during the meeting.

New Board members and roles

This year, EPF members elected one new Board member: Brian West (European Aids Treatment Group). They also reconfirmed Elisabeth Kasilingam (European Multiple Sclerosis Platform), Marzena Nelken (Federation of Polish Patients) and Michal Rataj (European Alliance of Neuromuscular Disorders Associations) as Board Members. Marco Greco remains President for another mandate. For the first time ever, as per the EPF Constitution, a seat in the Board has been granted to a representative of the EPF Youth Group, which was won by Jana Popova.

The first-ever elected members of the EPF Ethics Committee

This year, EPF has introduced the Ethics Committee, as per Art. 30 of the EPF Constitution. The role of the Ethics Committee members include issuing opinions or advice upon written request from the Board; recommending appropriate handling of conflict of interests, and providing  general advise on wider ethical issues that EPF needs to address, in the context of legislation or practice. The election led to Amanda Bok (European Haemophilia Consortium), Anita Arsovska (Stroke Alliance for Europe), Birgit Dembski (BAG Selbsthilfe), Stella de Sabata (International Diabetes Federation European Region) and Mateja Krzan (European Network of Fibromyalgia Associations), being voted in.

New EPF members

EPF is also delighted to welcome three new full members 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 Greek Patients Association to our organisation. Two prior Associate Members to EPF were also voted into becoming Full Members – hearty congratulations on their updated status to Digestive Cancers Europe (DICE) and Lung Cancer Europe (LuCE).

EPF Youth Group – the young patients’ perspective

The President of the EPF Youth Group, Ivett Jakab, presented the latest updates on the work of the Youth Group and the exciting plans and projects to look forward to in 2020. Some of the highlights included the results of the WAYS (Work and Youth Strategy) project, which aimed at raising awareness, achieving equal access to job opportunities for young people with chronic conditions and non-discrimination on the job market; the revised Youth Group Strategy, and the welcome of the new Youth Group members.

Ivett also introduced this year’s Summer Training Course for Young Patient Advocates (STYPA). It will take place between May 2020 and October 2020 and will be the first Youth Group Summer Training to be conducted entirely online. The newly formatted program will give Young Patient Advocates a fantastic opportunity to develop vital skills for their overall success and happiness, while considering their unique needs and circumstances. There have already been 48 pre-selected applicants and finishing touches are being applied to ensure the best experience for everyone involved.

Efficient results and engaged membership during difficult global health circumstances

While usual EPF AGMs take place during an entire weekend, this year, the progressive online version of the AGM only lasted for a Saturday morning. Nevertheless, EPF ensured that the 2020 strategy all fundamental information that will ensure the success for our patients in the upcoming year were shared.

Despite the conditions, this was our most popular AGM event in history, with nearly 80 attendees and more organisations representing patients with chronic conditions than ever before. The virtual setting did not hinder the involvement or engagement of any member who was willing to contribute to the benefit of our mission.

We could not be more appreciative to all of our flexible and adaptive members who took part in the AGM and continue to aid us in strengthening the pan-European patient community. We look forward to seeing you again soon, hopefully face to face, in a safer and healthier outside world!