ELPA Educational Training – DAY THREE, 18th November 2020

ELPA Educational Training – DAY THREE, 18th November 2020

This ELPA Educational Training never ceases to surprise its attendees. The third day on November 18, 2020, was divided into two different parts. Before presentations from Pharma Companies, ELPA went sporty.

Yianoulla Koulla and Veronika Všetičkova, ELPA working group on MAFLD and NASH, animated a session entirely dedicated to practical steps on how to become more physically active. The first theoretical part, where participants also had the possibility to share their experience regarding being physically active, was followed by a live training session composed of some stretching exercises and some aerobic ones. Many participants asked questions and asked for advice related to physical activities and how to train as better and successfully as possible.

Straight after this first part, it was time for Pharma Companies to join the Educational Training. Dr. Judith Ertle, the representative of Boehringer Ingelheim, delivered her presentation giving an update of BI’s NASH strategy. Focusing on patients’ high-unmet needs, she started presenting the liver as a central organ for the metabolism and providing multiple essential functions. Then, after an overview of NASH disease, she showed different approaches to improve cirrhosis in NASH patients. She concluded her speech by giving some details about clinical trials coming up in 2021. At the end of the presentation, questions went in both directions. Participants were curious about BI’s commitment to NASH, but also BI’s representatives were interested in ELPA’s point of view on the topic.

After the break, some representatives from Norgine took the floor. Kym Jacks-Bryant, Head of Digital Centre of Excellence at Norgine, presented LiverSync, an App for empowering patients living with Hepatic encephalopathy (HE) to take an active role in monitoring their condition. She went deep into the App’s features and into its safety in terms of personal data protection. This new branch of technology applied to health care fascinated the participants who asked many questions and stressed the importance of these tools, especially in the current times when the COVID-19 crisis makes access to treatment and hospitals more and more difficult.

Before the end of the meeting ELPA President, Marko Korenjak reminded everybody of the topics of the next Wednesday’s ELPA Educational training webinar, inviting the audience to join on November 25, for another exciting ELPA training day.

ELPA Educational Training – DAY TWO, 11th November 2020

ELPA Educational Training – DAY TWO, 11th November 2020

Differently from day one, the second day of ELPA Educational Training on November 11, 2020, was entirely dedicated to presentations from Pharma Companies. The meeting started with ELPA President Marko Korenjak welcoming everybody.

Dr. Elliot Norry, the representative of Adaptimmune, delivered the first presentation. He went deep into the work the company is doing concerning liver cancer. He presented a complex and personalized therapy and the related stage of clinical trials. He also tried to sketch what would come next, and he stressed the importance for patients to understand how a treatment works. However, it is complicated to translate complex medical procedures into more straightforward content. Yet, the company has social media channels with materials that can be used by patients and advocates. One of the most exciting characteristics of this session was the attendees’ involvement. They were able to ask many questions and discuss this topic from their points of view.

After the break, some representatives from Mirum took the floor. Dr. Ed Tucker presented how Mirum engaged with patients and gave an overview of the ongoing clinical trial and treatments. ELPA was delighted to hear from such a young but engaged company. Mostly because they are totally focused on rare liver diseases both in children and in adults. The fact that too many liver disease patients still fall victim to the unknown and for many liver diseases, their causes, as well as effective diagnostics, treatments, and cures remain unclear, motivated the audience to ask many questions, especially about paediatric clinical trials.

Before the end of the meeting ELPA President, Marko Korenjak reminded everybody of the topics of the next Wednesday’s ELPA Educational training webinar, inviting the audience to join on November 18, for another exciting ELPA training day.

About Alcohol abuse, the Awareness Week on Alcohol Related Harm is approaching

About Alcohol abuse, the Awareness Week on Alcohol Related Harm is approaching

The public health aspects of the problems associated with alcohol use and abuse are exploding. Around 12% of cancer cases worldwide are linked to alcohol consumption, and Europe is the world’s heaviest drinking region.

Alcohol abuse has devastated many lives and significantly harmed many patients and families. Abuse of the ‘social drug’ alcohol has long-term consequences for all aspects of our society.

However, there are so many benefits to drinking less alcohol. Many alcohol-related health risks do not appear until later in life. Drinking less will reduce our risk of developing severe health issues such as cancer, liver, or heart disease and could contribute to lowering our blood pressure. Besides, Alcohol can contribute to the development of mental health difficulties, as well as making existing problems worse. Reducing alcohol intake could, therefore, improve our mental health. Alcohol also has a high-calorie content and so, regularly drinking increases your calorie intake. Reducing how much we consume and how often and opting for low-calorie alternatives can contribute to maintaining a healthy weight and appearance. Finally, yet importantly, we should consider the positive effect on our energy levels and our ability to concentrate.

We should be sure that these messages also get to the new generations.

Regarding the younger, check out the results from the European School Survey Project on Alcohol and Other Drugs in collaboration with the EU drugs agency (EMCDDA).

ESPAD Report 2019 — Results from the European School Survey Project on Alcohol and Other Drugs

ELPA Educational Training – DAY ONE, 4th November 2020

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.

New synergies for ELPA

New synergies for ELPA

We are pleased to announce that ELPA signed a Memorandum of Understanding (MoU) with the European Kidney Patients’ Federation (EKPF).

This new MoU has as the objective to formalize the cooperation between EKPF and ELPA to improve the well-being of patients and provide support to the patient population. The two associations will join forces in raising awareness, networking, and advocacy.

 

It is important to stress that both of the organizations are part of the European Patients’ Forum (EPF). Working together and being part of a bigger umbrella patients’ association is the key to successfully influencing decision-makers and putting patients in the spotlight.

 

Together we are stronger!

ELPA Director elected Vice President of the “Alliance of Patient Organizations” of Macedonia

ELPA Director elected Vice President of the “Alliance of Patient Organizations” of Macedonia

ELPA would like to congratulate Milan Mishkovikj, ELPA Director, for having been elected Vice President of the “Alliance of Patient Organizations” of Macedonia.

The “Alliance of Patient Organisations” is an organisation gathering patient organisations from FYROM – North Macedonia (Created in 2016).

The organisation’s objectives are:

  • to provide access to treatment, improve the conditions of treatment and enhance the patients’ quality of life;
  • to develop health policies at national level to protect patients’ rights;
  • to foster the cooperation between state bodies, health organisations and healthcare professionals in the design and implementation of strategies, criteria, standards, best practices in the health care of Macedonia.

The participation of an ELPA Director in the governing board of the Alliance is an extremely important sign of how Patients’ associations should work together at the national and international level because only together we are stronger.

ELPA and DiCE meeting on liver cancer. ‘Together we are EVEN stronger’

ELPA and DiCE meeting on liver cancer. ‘Together we are EVEN stronger’

On October 21, 2020, on the occasion of Liver Cancer Awareness Month, the European Liver Patients’ Association joined forces with Digestive Cancers Europe (DiCE) organizing, in the framework of DiCE Masterclass series, the webinar ‘Deep Dive into Liver Cancer’.

This session delved into the intricacies of liver cancer and how best to support people affected by it on their personal journeys. During the first part, all the attendees had the occasion to listen to presentations delivered by three medical doctors.

Dr. Teresa Casanovas Taltavull, a former hepatologist, and leader of ELPA Scientific Committee, sketched the characteristic of liver cancer and stressed the importance of multidisciplinary medical teams to tackle the disease at the best. Dr. Casanovas Taltavull was able to translate extremely complex medical contents into something very clear and useful for the entire liver patients’ community. A quick Q&A session led the participants to the second presentation by Prof. Jeroen Dekervel member of the Digestive Oncology team at the University Hospitals Leuven. His current research focuses mainly on hepatocellular carcinoma. He tries to unravel the reasons for success and failure of the new available systemic (combination) therapies. He presented to the audience new agents in the treatment of liver cancer. After a quick Q&A session, the last presentation was about the role of interventional radiology in the treatment of liver cancer and was delivered by Prof. Thierry de Baere, head of the Interventional Radiology Unit at Gustave Roussy Cancer Centre, and University Paris-Saclay.

After a short coffee break, it was time to listen to a moving testimony from a liver cancer patient. The story of this patient showed all the complexities of the disease in terms of difficulties in treatment, different implications, and relapses. The patient’s testimony was followed by an oncologist who not only described her experience in treating liver cancer patients, but she also outlined how important patients’ associations are in helping patients.

The last hour of the meeting was exclusively dedicated to ELPA and DiCE members. After a short presentation of the two associations by their Presidents, all the members virtually mingled in order to know each other and exchange views on patients’ advocacy. They all agreed on the importance to create collaboration not only at the international level but also at the national one. One good example is Macedonia where both a representative from ELPA and from DiCE are part of the governing board of the National Alliance of Patient Organizations, working together for patients’ wellbeing.

The conclusion of the day can be sum up in a new version of ELPA motto ‘Together we are stronger’. In the light of the fruitful meeting, Marko Korenjak, ELPA President, and Stefan Gijssels, DiCE Chief Executive Officer stressed the fact that ‘Together we are EVEN stronger’.

PSC Day 2020

PSC Day 2020

PSC Day 2020-Materials

PSC MATERIALS FLIPBOOK

PSC Day 2020

DOWNLOAD PDF MATERIALS – LINK

PSC Materials [PDF]

New article on HCC published in Liver International by Prof. Shiha, ELPA Director

New article on HCC published in Liver International by Prof. Shiha, ELPA Director

ELPA is proud to announce the publication on Liver International of the article ‘GES: A validated simple score to predict risk of HCC in patients with HCV-GT4 associated advanced liver fibrosis after oral antivirals’ written by Pof. Gamal Shiha, Director of the European Liver Patients’ Association and CEO of the Egyptian Liver Research Institute and Hospital (ELRIAH), Mansoura, Egypt.

Hepatocellular carcinoma (HCC) risk persists after hepatitis C virus (HCV) eradication with direct‐acting antivirals (DAAs), particularly in patients with liver cirrhosis. Identifying those who are likely to develop HCC is a critical unmet medical need.

In three large cohorts of HCV patients with liver cirrhosis and advanced fibrosis with sustained virologic response (SVR) after DAA, Prof. Shiha and his team developed and validated a simple General Evaluation Score (GES). This score can accurately stratify patients according to HCC risk and help to identify patients who will not benefit from continued HCC surveillance based on a patient’s estimated risk, enabling a personalized surveillance strategy targeting those who are at high HCC risk.

GES score needs to be further replicated in further independent large cohorts of different origins before it can be further recommended for use for HCC surveillance in clinical practice. This kind of score can offer individualized patient HCC risk prediction.

ELPA would like to congratulate Prof. Shiha and Prof. Soliman on this excellent work and article. We are honoured and happy to have you in our ELPA family.

You can read the whole article here: https://onlinelibrary.wiley.com/doi/abs/10.1111/liv.14666