ELPA is part of the Advisory Forum of the European Centre for Disease Prevention and Control (ECDC)

ELPA is part of the Advisory Forum of the European Centre for Disease Prevention and Control (ECDC)

ELPA is an official member representing non-governmental organisations – patients, of the Advisory Forum of the European Centre for Disease Prevention and Control (ECDC).

ELPA President Marko Korenjak has been selected to be part of the Advisory Forum. An assembly aimed to support the Director in ensuring the scientific excellence and independence of activities and opinions of the Centre. It constitutes a mechanism for an exchange of information on health threats and the pooling of knowledge. It also ensures close cooperation between the Centre and the competent bodies in the Member States in particular on the following items:

• coherence of the Centre’s scientific studies with the Member States;

• in those circumstances where the Centre and a national body cooperate;

• the promoting, starting up, and supervising of the European networks within the fields of the Centre’s mission;

• where the Centre or a Member State identifies an emerging public health threat;

• the setting up of scientific panels by the Centre;

• scientific and public health priorities to be addressed in the work programme.

The main task of the patient organisation representative is patient advocacy to ensure that patient and public perspectives are taken into account in the advice to the ECDC Director, in support of the overall role of the Advisory Forum.

ELPA is honoured to be part of the Forum, and it will work together with the rest of the team to improve the work of ECDC putting patients in the spotlight.

ELPA Educational Training – DAY 4

ELPA Educational Training - DAY 4

The fourth and last day of the ELPA Educational Training took place on July 7, 2021. Three presentations from pharma companies were scheduled, and this was probably the most interactive day of the entire training.

The morning started with a representative from Novo Nordisk, Dr. Ichhya Shrestha, MD – Global Medical Manager, giving an overview of the companies’ commitment to NASH. Differently from the usual, all the presentations were accompanied by questions and answers from both parts. This last day session was turned into a kind of dialogue between pharma and patients’ representatives. NASH is a field that really passionate ELPA Members because it represents one of the biggest challenges of the future, and this was also reflected in the exchanges that was mainly based on how to increase the awareness among both patients and medical doctors, the unmet needs in this area, the importance of the name changing into MAFLD and the correlation with other conditions. Dr. Shrestha finished her presentation by giving some details related to the Novo Nordisk NASH pipeline in clinical development.

After a short break, Dr. Laurent Domas, VP Global Interventional Oncology Strategy and Therapy Development at Terumo, took the floor. He presented Interventional Oncology as the 4th pillar of cancer care, and he went through different ‘tools’ in the Interventional Oncology box. Dr. Domas also linked these options and procedures to the different stages of liver cancer. He finished his presentation comparing HCC guidelines over the years and shoving how today, the focus in this field is improving therapies that preserve liver function for longer survival. He also stressed that the future direction is represented by a combination and personalization of all these therapies. ELPA Members asked many questions regarding the therapies presented and, together with Dr. Domas, agreed on the importance of having a multidisciplinary team following the patient’s journey.

The third and last presentation was delivered by two representatives from Ipsen, Ms. Pascale Cavillon, Global Patient Centricity Director, and Dr. John Boyer, Global Medical Director Oncology. The first part was dedicated to Ipse’s commitment to patients and its proactive approach to patient-centricity. As stressed by Mr. Marko Korenjak, ELPA President, this is also proven by the long and fruitful relationship Ipsen has with ELPA. Ms. Cavillon then pointed out that by working with people living with conditions, their families, and caregivers, Ipsen can understand the whole picture to help it deliver real and innovative solutions together and faster, making a meaningful difference. Then the focus moved on working with patients’ organizations in the field of cancer. Dr. Boyer shared a patient experience framework representing the journey of patients with HCC. The presentation ended with an overlook to the global/local past collaboration with ELPA on HCC and a glimpse at future activities.

ELPA Educational Training – DAY 3

ELPA Educational Training - DAY 3

The third day of the ELPA Educational Training took place on June 30, 2021, and focused not only on presentations delivered by pharma companies representatives.

The meeting started with Ms. Mireia Alemany, who presented A Healthy Liver Will Always Deliver!, a comic to raise NAFLD awareness and promote healthy lifestyles.Firstly she explained some general concepts related to why comics are an excellent way to come across medical content. Then she gave more details related to the comics born in the Fois Gras Project framework – funded under Horizon 2020 Marie Sklodowska-Curie program – and in collaboration with: metabolic patients, psychologists, sociologists, and a European network of biomedical researchers.

After the presentation, a questions and answers session, moderated by Mr. Marko Korenjak, ELPA President, allowed the participants to go deeper into details. Attendees were particularly active, and questions were mainly focused on the possibility to translate the comic into more ELPA Members national languages.

The second presentation was delivered by Dr. Florian Abel, MD, and Dr. Brian Meltzer, MD, representatives from Alexion Pharma. They gave an overview of Alexions commitment to the field of two specific rare liver diseases: Lysosomal Acid Lipase Deficiency (LAL-D) and Wilson Disease. They both also stressed the patients’ journey towards a diagnosis and their challenges.

Before Mr. Marko Korenjak wrapped up the meeting, as it happened after the first presentation, Alexion’s presentationwas followed by many questions primarily related to clinical trials and the importance of working together with patients associations to raise awareness on these two rare diseases.

ELPA Educational Training – DAY 2

ELPA Educational Training - DAY 2

The second day of the ELPA Educational Training took place on June 23, 2021. After the first day that hosted presentations on Horizon 2020 medical, scientific projects, the second day focused on presentations delivered by pharma companies’ representatives.

The meeting started with Dr. Salvador Augustin, MD from Boehringer Ingelheim, who focused his presentation on Boehringer Ingelheim’s NASH Pipeline Program updates. First, he stressed the unmet needs in NASH treatment and how this is a complex disease. Then, he gave an overview of BI’s upcoming clinical trials in 2021.

After the presentation, a questions and answers session, moderated by Mr Marko Korenjak, ELPA President, allowed the participants to go deeper into details. Attendees were particularly active, and questions were mainly focused on patients’ participation in clinical trials, the lack of information and awareness regarding NASH, and how this topic must channel efforts from all the involved stakeholders.

The second presentation was delivered by Dr. Ed Tucker, MD Chief Medical Officer at Mirum. He gave an overview of Mirum’s commitment to the field of rare liver disease, detailing how they are addressing rare liver diseases for children and adults. He stressed that there are many unmet needs regarding this topic, which is also why patients’organizations are crucial. In conclusion, he showed the participants Mirum’s road to delivering new treatments for rare liver diseases.

Before Mr Marko Korenjak wrapped up the meeting, as it happened after the first presentation, Dr. Tucker’s talk was followed by many questions especially related to clinical trials and ICP in pregnancy.

ELPA ISO 9001:2015 Quality Certification

ELPA ISO 9001:2015 Quality Certification

On 29th June 2021, ELPA has achieved something extraordinary.

ELPA is now the FIRST and the ONLY patient association in Europe with the official certification of the Quality Management System in place. ELPA managed to build a quality system of its work, recognized by an external certification body, and got the ISO 9001:2015 certificate related to its Management in Communication with Supporters and Stakeholders.

The purpose of ISO 9001:2015 is to help an organization develop a robust Quality Management System to respond to evolving quality requirements in line with changing social, economic, and environmental expectations.

Implementing a Quality Management System in a nonprofit organization like ELPA means:

To rethink an organization: why does it exist; what are the priorities; how does it relate with its environment; how does it work; and what should be measured and improved.
To develop a consistent way of working and monitoring thanks to the process approach and risks management.
It serves internally to make deadlines and processes clear.
To reinforce the message of clarity, trust, and professionalism towards supporters and donors.
To enhance donors, supporters, beneficiaries, the general public, and stakeholders satisfaction.

This is just the first step, the certificate will expire in 3 years, and during this time, ELPA’s work will be reassessed each year. This is the reason why ELPA will continue improving its communication with Supporters and Stakeholders, showing its high level of professionalism and commitment towards liver patients.

Raising awareness on #FattyLiver among children

Raising awareness on #FattyLiver among children

ELPA is back to school. Between May and June 2021, ELPA was involved in the EU Project PaCo,Participation in Society through Classroom Activities and Cooperation.”

The project, financed in the framework of the Erasmus+ programme, involves 6 countries: Finland, Estonia, Spain, Hungary, Czech Republic, and Slovenia. It aims to develop students’ participation and citizenship education to provide the background knowledge necessary to maintain a civilized society. It also promotes associational activities with NGOs, decisionmakers, and local expertise in the schools. 

In this context, ELPA President Marko Korenjak had the occasion to talk in front of many teachers coming from the involved countries, how an International Non-Governmental Organization like ELPA works, its activities in the field of NASH, and he gave an overview of the disease also presenting some material to use with students.

In the second phase, the acquired knowledge has been transferred by the teachers in the classroom to the pupils. In a simplified language, but wholly and correctly, they could hear about the importance of a healthy liver, how to preserve its healthiness with a proper diet, and some good lifestyle habits.  

However, there is more. Now it is time for children from 6 countries to turn all this information into aunique piece of art. Some pictures of posters, collages, draws, etc., will be collected by ELPA and posted on ELPAs social media during the upcoming month, teaming up with the national ELPA members from the countries involved in the project.

The cooperation with ELPA Members will continue connecting them with the local schools to push forward the collaboration and the awareness on liver disease.  

Stay tuned!

ELPA Educational Training – DAY 1

ELPA Educational Training - DAY 1

Therapies for acute decompensation of cirrhosis and ACLF, research needs and outlook.’ Under this title, ELPA presented, on June 9, 2021, its first Educational Day dedicated to DECISION, MICROB-PREDICT, and A-TANGO, all projects ELPA is involved in.

Three EU-funded research projects, MICROB-PREDICT, DECISION, and A-TANGO, joined forces to improve the prevention and treatment of cirrhosis. All three consortia aim to understand the disease better, identify biomarkers and mechanisms that predict when the body can no longer compensate for the dysfunctional liver (decompensated cirrhosis) when decompensated cirrhosis progresses to acute on chronic liver failure (ACLF), and patient’s individual treatment response. They strive to develop novel diagnostic tools, based on the newly identified biomarkers, for earlier and better patient stratification and to establish personalized and effective treatment strategies. In MICROB-PREDICT, the focus thereby lies on microbiome-based strategies. DECISION aims to identify new combinatorial therapies, and A-TANGO will investigate one specific, promising substance in a clinical trial.

During the meeting, the projects and their implications for the future management of patients with cirrhosis were discussed.

After an introduction by Prof Dr Rajiv Jalan, professor of Hepatology University College London, UK, principal investigator A-TANGO, EF Clif, Barcelona, Spain, the first presentation was made by Prof Dr Pierre-Emmanuel Rautou, professor of Hepatology Hôpital Beaujon, Inserm UMR, France, principal investigator DECISION, EF Clif, Barcelona, Spain. He gave an overview of existing therapies, drugs, and research needs.

Then, Prof Dr Jonel Trebicka, professor of Hepatology Goethe University Frankfurt, Germany, principal investigator MICROB-PREDICT, EF Clif, Barcelona, Spain, presented about candidates/pathways/targets will be important in future, e.g., gut-liver axis, microbiota.

Dr Cornelius Engelmann followed Prof Dr Trebicka. He gave information to the attendees regarding G-TAK as a promising drug candidate in the framework of A-TANGO project.

A questions and answers session, moderated by Mr Marko Korenjak, ELPA President, allowed the participants to go deeper into projects’ details.

ELPA NASH Symposium

ELPA NASH Symposium

The European Liver Patients Association (ELPA) organized a virtual NASH Symposium on June 10, 2021.
This Symposium that is just the culmination of a series of actions promoted during the entire #FattyLiverMonth, besides the scientific approach of the disease by eminent speakers, also allowed NASH patients to share with ELPA their own testimony of how they deal with this life-threatening disease.

After Mr Marko Korenjak, ELPA President had welcomed everybody, two Members of the European Parliament from the Republic of Cyprus, Mr Loucas Fourlas, Group of the European People’s Party (Christian Democrats), and Mr George Georgiou, Left group in the European Parliament – GUE/NGL, greeted the participants. Then, Mr Marco Greco, President of the European Patients’ Forum (EPF), welcomed attendees stressing the importance of patient’ associations in the fight against this disease.

Before getting into the most scientific part of the Symposium, Mrs Yianoulla Koulla, President of Cyprus Liver Patients’ Association and Leader of ELPA NAFLD / NASH Working Group, introduced a short video by Mr Constantinous Ioannou, Minister of Health of Cyprus. After his greetings, she quickly presented the ELPA NAFLD / NASH Working Group, its people, and activities.

The scientific part of the Symposium was opened by Dr Teresa Casanovas, Leader of the ELPA Scientific Committee and ELPA Director. She introduced the first speaker, Prof Dr Henning Groenbaek, from the department of Hepatology & Gastroenterology, Aarhus University Hospital, Aarhus, Denmark. He gave an overlook of the treatment of NAFLD from lifestyle intervention to bariatric surgery. After him, the floor was given to Prof Dr Gamal Shiha, G.I & liver unit, Mansoura University – Egypt, Association of Liver Patients Care (ALPC), the Egyptian Liver Research Institute and Hospital (ELRIAH), Egypt. Prof Dr Shiha brought to the audience’s attention the crucial topic of the name’s changing from NAFLD to MAFLD. He also underlined the advantages from the point of view of patients and hepatologists. Dr Ramon Bataller, hepatologist, researcher, alcohol risks specialist, University of Pittsburgh, Department of Medicine, Pittsburgh, US, contributed to the Symposium releasing to ELPA an interview where Dr Casanovas explored with him Chronic Liver Disease related to alcohol. From the discussion emerged how the particular risks on patients suffering from liver steatosis are higher, and they have a faster progression of their liver disease. The conclusion was that patients need more information about it. This session continued with Dr Panayiota Protopapa, clinical Lead and specialist Paediatrician Paediatric Liver, GI and Nutrition Centre Archbishop Makarios III Hospital and King’s College Hospital, Republic of Cyprus. She gave a talk on a particular and underestimated topic: the diagnosis and treatment of paediatric NAFLD. Then, Dr Gonzalo Crespo, transplant hepatologist, Liver Unit, Hospital Clínic, Barcelona, IDIBAPS and CIBERehd, Spain, gave an update on liver transplants for NASH with or without HCC. He also presented some particular challenges in this population in 2021. The scientific session was concluded by Prof Dr Shira Zelber-Sagi, Associate Professor Head of School of Public Health, Faculty of Social Welfare and Health Sciences, University of Haifa, The Tel-Aviv Medical Center, Department of Gastroenterology and Hepatology, Israel. She shared with the audience a presentation on the nutritional treatment of non-alcoholic fatty liver disease.

From nutrition, the Symposium moved to the importance of an active lifestyle. Ms Veronika Všetíčková, physiotherapist, and healthy lifestyle coach, share some tricks and tips on how to introduce physical exercise in our daily life.

Before ELPA President’s closing remarks, participants could hear from two patients: Mrs Petra Saarinen and Mr Milan Mishkovikj, telling about their journey with the disease.

Latest updates on COVID-19 vaccines

Latest updates on COVID-19 vaccines

ELPA, as part of the Patients’ and Consumers’ Working Party (PCWC) at the European Medicines Agency (EMA) would like to share with you EMA’s recent communications on COVID-19 vaccines:

All the latest updates on COVID-19 vaccines and treatments are available by clicking here.

ELPA president Marko Korenjak-European Immunization Week

ELPA president Marko Korenjak-European Immunization Week

European Immunization Week (EIW)

Dear ELPA friends,

The WHO European Region celebrates European Immunization Week (EIW) every year in April to raise awareness of the importance of immunization in preventing diseases and protecting life, ensuring overall health protection.

The COVID-19 pandemic has demonstrated the importance of immunization; COVID-19 vaccination is a vital tool to help us end the pandemic, but no one is safe until everyone is safe. This applies to all kinds of vaccinations.

As a liver patients’ association, ELPA cannot deny the importance of the Hepatitis B vaccine in lowering the number of infections and also the impact in terms of liver cancer development.

If routine immunization is neglected because of COVID-19, the impact will be felt long after the pandemic is over. Essential routine vaccination services must be maintained even during the pandemic. Those who face barriers to vaccination are also those who suffer the most severe consequences from the diseases.

Be an everyday hero; get vaccinated for yourself, your family, and your community!