ELPA Educational Training – DAY ONE, 4th November 2020

The first day of ELPA Educational Training on November 4, 2020, started with ELPA President Marko Korenjak, stressing why that first day was entirely dedicated to members. He explained that ELPA’s activities’ structure is changing because the workgroups put together members that want to be active in the field. For this reason, they needed a dedicated moment to present their work.

The first presentation was delivered by Julio Burman, ELPA Vice President and leader of the Clinical Trial workgroup. He underlined the importance of Patients’ association in this field. According to him, patients’ associations can inform patients, translate difficult medical contents for them, and encourage them to participate in clinical trials. Patients’ associations form, together with patients, companies, and health professionals, a sort of coalition.

Yiannoula Koulla, leader of MAFLD/NASH workgroup, followed Julio Burman, firstly presenting all the participants in the group and then introducing the disease, also stressing the importance of using the new name MAFLD. She continued her presentation listing all the activities, including developing a new App, the group had scheduled for the upcoming year both for the younger and for adults. Part of the presentation was dedicated to the importance of prevention and a healthy lifestyle and awareness of these topics.

Ivana Dragojevic, leader of the workgroup on prevention, took the floor and detailed two new 2021 projects in this field. The first is called ‘HepFreeBudge’ and aims at tackling Hepatitis involving professionals in the beauty parlors. The second one is the HBV and women project. It focuses on different 12 areas to raise awareness and understand all the women’s concerns related to their lives and HBV.

Before the coffee break was the turn of Sindee Weinbaum, leader of the rare diseases workgroup. She stated that rare diseases are a vast topic and a large area to cover. However, they managed to work on many liver rare diseases as the fruitful collaboration with new partners had shown in the two most recent awareness campaigns on PBC and PSC.

After the coffee break, ELPA President Marko Korenjak gave an overview regarding ELPA’s involvement in medical, scientific projects. He started stressing how ELPA’s participation boosted the reputation of the association. Then, he sketched why patients should be involved in medical, scientific projects. Moreover, he presented the new EU program Horizon Europe 2021-2027 that has a specific focus on cancer. He also updated the members regarding the number of projects ELPA is currently involved in. They increased from 7 to 8 as ELPA is participating in a new project in the field of Acute-on-chronic liver failure (ACLF).

The floor was given back to ELPA Vice President and fundraiser leader Julio Burman, who make the participants aware of some tips to keep in mind when they approach donors. He stressed the importance of considering that NGOs’ voice is unique as well as their activities. Donors need to collaborate with them. He also gave some insights about the right jargon and approach to use in communicating with donors. Then, he presented what donors like to support the most and some new trends. The last part of his presentation was dedicated to awareness campaigns’ relevance and how to plan a successful project to present to donors. His conclusion was focused on the importance of measuring and showing numbers as a first step to be fruitful in fundraising.

ELPA President Marko Korenjak, who thanked the attendees for being present and inviting everybody to participate in the second day of ELPA Educational Training next Wednesday wrapped up the meeting.