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.

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!

A new partnership in the fight to Hepatitis

A new partnership in the fight to Hepatitis

The European Patients’ Association (ELPA) is proud to announce the signature of a new Memorandum of Understanding (MoU) with The Coalition for Global Hepatitis Elimination (CGHE) Task Force for Global Health. The MoU was signed by Mr. Marko Korenjak, President of ELPA, and Dr. John Ward, Director of the Coalition on April 20, 2021.

To ultimately reach the global hepatitis elimination goals, partners will have to work together to accelerate progress. This agreement represents a step forward in this direction by bringing together two key global stakeholders in the fight for hepatitis elimination. The two organisations will work together to advocate for additional international and national commitment to hepatitis elimination and develop resources and opportunities to strengthen hepatitis prevention, testing, and treatment programs, with the end goal of improving the lives of people living with hepatitis B and C.

Specific activities of collaboration between the two organizations may include: developing national hepatitis elimination profiles; establishing or promoting local hepatitis elimination coalitions; developing educational webinars; and convening key partners to discuss programmatic and policy challenges. Look out for announcements on upcoming events and opportunities.

ELPA does look forward to this collaboration!

More information on the organizations:

Coalition for Global Hepatitis Elimination (CGHE). To catalyze progress toward achievement of the goals for viral hepatitis elimination globally, the Task Force for Global Health (TFGH) launched CGHE in July 2019. Modeled after other TFGH disease elimination programs, the CGHE works to eliminate hepatitis B and hepatitis C by strengthening the capacity of national and sub-national elimination programs through technical assistance, knowledge generation, and advocacy among partners united in a community of practice. Over 100 HBV and HCV programs have joined the Coalition.

The European Liver Patients Association (ELPA), based in Brussels, Belgium is an umbrella association representing 31 members form 25 countries. ELPA’s aim is to promote the interests of people with liver disease and in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards.

ELPA’s one of the main activities are:

  • Representing and supporting ELPA members (to encourage, educate, …)

  • Advocacy for patients’ voice on European level

  • Communication and collaboration with pharma industries

  • ELPA is a part of EMA’s PWCP

  • Organizing high level events in European Institutions

  • Involvement in several EU Projects representing patients’ needs and experiences

  • Very successful profiles on social media, as a way of reaching also general public

‘Successful women in ELPA’s family,’ second act

‘Successful women in ELPA’s family,’ second act

On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women in ELPA’s family,’ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients’ associations. The event was live-streamed on the ELPA Facebook page.

However, ELPA would like to continue raising awareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.

FIRST EPISODESECOND EPISODETHIRD EPISODEFOURTH EPISODE

FIFTH EPISODESIXTH EPISODE

Sindee Weinbaum, representative of the ELPA Member Hetz, the Israeli Association For The Health Of the Liver, and the ELPA Working Group leader on Rare Liver Diseases

ELPA: Sindee, what is the burden a patient with a rare disease has to carry? Do you think it could be more challenging to deal with these kinds of conditions from a woman’s perspective?

Sindee: When you have rare liver disease, people cannot see it most of the time. You always look perfect. It is something invisible. You do not look sick, some symptoms don’t show up, and people do not understand. However, the disease is there. Women definitely have an extra burden when they have rare liver disease. As women, they have to be a mother, a wife, a friend, a colleague, and do everything that is expected of them and handle the bumps in the road that having a liver disease can cause.

E: I know you are more and more involved in paediatric rare liver disease advocacy. From your perspective, what are the most prominent obstacles families have to face when it comes to this scenario?

S: There are many obstacles, for sure. In these families, the attention shifts entirely to the sick child. And if there is more than one child, parents have to deal also with the fact that who is not ill can feel kind of abandoned. All of this is incredibly difficult to balance. One of the children needs undoubtedly a lot of time and attention. This is the reason why support groups are so important. We create some in Israel primarily dedicated to parents with children with paediatric rare liver diseases. They have people to speak with, share their experience, ask for advice, and get in touch with people going through a similar experience. They need support as caregivers. They need help when their children participate in a clinical trial or have to face a transplant.

We should also focus on the fact that mothers are usually expected to be the person entitled to caring, the caregiver, which means additional work and stress.

E: How was the support group for PSC’ers in Israel created?

S: I was diagnosed with PSC in 2009 after being ill for over 18 months and suffering quite a bit. I was suffering from being sick and handling the bureaucracy, different doctors, and no answers. After all of this, I decided I had to do something to help others who were suffering to not go through what I had gone through.

I started a support group for PSC’ers in Israel with another couple, and we joined forces with Hetz a little while later. After starting with only four of us, today, we have hundreds of members. We are in touch with associations from all over the world and a very active support group. We also started a support group for PBC and have developed support for paediatric diseases, as I told you before. Besides this, we are working with NASH patients. I also help patients as a patient advocate on the road to transplant.

I believe that what I do helps me stay well and alive.

E: What is your approach towards patients who ask for help?

S: I have a motto. My motto is “living life alongside the disease instead of focusing on the disease.” Do not let the disease control your life. Keep going. It takes time for people, for patients, to start this small revolution, but they usually get there, and it helps them to keep their lives as normal as possible.

E: A wish for the future…

S: I think that no matter which country they are from, which religion they believe every woman can be expected to be SuperWomen, they must be aware that they can do everything by themselves.

SAVE THE DATE – International Viral Hepatitis Elimination Meeting, 3-4 December 2021

SAVE THE DATE - International Viral Hepatitis Elimination Meeting, 3-4 December 2021

The International Viral Hepatitis Elimination Meeting (IVHEM) is a global forum for the exchange of practical experiences for translating diagnostic and therapy advances of viral hepatitis into broad applications that accelerate progress towards the elimination of viral hepatitis as a public health threat by 2030. The program includes practical examples of innovative intervention studies, country elimination programs, and novel funding mechanisms for testing and treatment.

During this two day meeting, experts in viral hepatitis from around the globe will examine current evidence on how to implement programs that improve the prevention of viral hepatitis and increase the number of people accessing testing and treatment. Everyone will have an exceptional opportunity to share and acquire knowledge, and experience a wide spectrum of topics related to viral hepatitis.

 

‘Successful women in ELPA’s family,’ second act

'Successful women in ELPA's family,' second act

On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women in ELPA’s family,’ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients’ associations. The event was live-streamed on the ELPA Facebook page.

However, ELPA would like to continue raising awareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.

FIRST EPISODESECOND EPISODETHIRD EPISODEFOURTH EPISODE

FIFTH EPISODE

Dr. Lina Nerlander, an epidemiologist working at the European Centre for Disease Prevention and Control (ECDC)

ELPA: As a woman working in an international organization, what are your best career tips?

Lina: I do not think that these could be only for women. I believe that these could apply to everyone. Since I was a student, something I started doing is finding people you admire, people you are interested in, their position, and what they are doing. Then, I think it is crucial to get in contact with them, having a phone call, a coffee, exchange some words. Usually, if they are a little bit ahead of you, they can help you share tips and advice. It could be helpful not only to get a promotion but also to know more about a job position’s content.

You might think you are troubling them, but I think you are not because not so many people are doing this. Seniors are rarely approached by colleagues. Also, people tend to be happy to help other people, so my best tip is not to be scared to do that. There will always be something useful to pick up.

E: When working at the US Centers for Disease Control and Prevention in the US, your job was focused on reproductive health and surveillance among people who exchange sex for money or drugs. Is there some gender-related evidence that you can share with us?

L: If I focus on the work I did regarding people who exchange sex for money or drugs, I did a study on women around the US. It was fascinating because preparing the work, we spoke with many women who exchange sex for money, and we tried to learn from their stories. It was a vast spectrum. On the one hand, we had women who felt much empowered. For them was a personal decision, they were making money, and they were upset to be treated as victims by researchers and the medical community. On the other hand, we had women addicted to drugs living on the streets, and they were not feeling empowered, for sure. A lot of them had distorted relationships with their boyfriends, with men in general. They were relationships with an unbalanced power, where the relation with a partner turned into the relation with a pimp. A lot of these women came from a background where they did not have many opportunities. They might have been sexually abused. I learned a lot about the fact that they did not have many options in their lives. And this is the point. We need to give them opportunities.

I also worked on men who sell sex, gay men, and they also had similar stories. Because of homophobia, they had to leave their families early. They had problematic relationships. In different ways, it is always about vulnerability.

E: Do you have some thoughts on particular challenges facing women?

L: I worked in different places. In Sweden, for instance, they have an excellent Welfare State. That means, for example, equal parental leave. Things like that, at a policy level, can facilitate women’s careers.

Since I was a little girl, I was told that we have all these unique challenges as women, but I have not experienced that a lot personally. Maybe working in public health could be different from other fields because there is a higher proportion of women. In any case, if I had a step back, or something did not go the way I want, I would not say something like ‘I am a woman, I have been discriminated against. Because this does not help, it does not make you able to have power and improve that situation or change some patterns. Women should be aware but not think that everything is because of their gender. Women, be more confident!

E: A wish for the future…

L: this question makes me think about my job, Hepatitis elimination goals, diagnosis, and the link to care. It is so complex, especially in the vulnerable population. However, women should be part of the process.

‘Successful women in ELPA’s family,’ second act

‘Successful women in ELPA’s family,’ second act

‘Successful women in ELPA’s family,’ second act

On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women in ELPA’s family,’ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients’ associations. The event was live-streamed on the ELPA Facebook page.

However, ELPA would like to continue raising awareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.

FIRST EPISODESECOND EPISODETHIRD EPISODE – FOURTH EPISODE

Fergane Heydarova, engineer, and Vice-President of the Turkish ELPA Member association HepYasam.

ELPA: When and how did you discover to have Hepatitis C?

Fergane: I was diagnosed with Hepatitis C by chance  – I received my test results, and I discover it –    when I was about to have rhinoplasty surgery in 2008.

E: How did your disease influence your job career? Did you struggle, or did you feel discriminated against? How did you manage to overcome all the obstacles?

F: Well, generally, there are sad stories about that, but I’m one of the exceptions, I believe. 

As soon as I received my result, I explained my seniors the situation, there were many questions, but at the end of the day, I was welcomed with understanding. Even after two years, when I’ve decided to start the treatment and quit the job (due to side effects of treatment),  I was asked to reconsider my decision cause I was told that I’d be supported. So I wouldn’t say that I had any obstacles to be discriminated against. 

E: You are now a mother of a 6-year-old girl. Were you scared of transmitting Hepatitis C to her during your pregnancy?

F: Yes, I was afraid and told my infection doctors following my medical story since the beginning and the obstetrician later.

I was told that there was a tiny possibility and that I would have been check regularly.

E: What did push you to engage actively in a liver patients’ association? Do you think that your activism also helped you deal with your disease?

F: My infection doctor made an outstanding contribution to this. Thanks to him, I met Ms. Hilal, the president of our association. She was the patient’s relative and went through hard times during her mother’s treatment. Together we saw many patients and their relatives and heard different stories that push me to engage in this association to support and sometimes speak on behalf of them. Since I committed to this association after my successful treatment, I wouldn’t say that it helped me deal with my disease.

E: A wish for the future…

F: I would like to see more women, strong women, not just hearing voices but strong voices expressing themselves.

‘Successful women in ELPA’s family,’ second act

‘Successful women in ELPA’s family,’ second act

‘Successful women in ELPA’s family,’ second act

 

On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women inELPA’s family,’ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients’ associations. The event was live-streamed on the ELPA Facebook page.

 

However, ELPA would like to continue raising awareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.

 

FIRST EPISODESECOND EPISODETHIRD EPISODE

Pascale Cavillon, Global PatientCentricityDirector at Ipsen.

 

ELPA:Pascale, what is my work environment like in Pharma?

Pascale:From my studies as a pharmacist to my first 15 years in Pharma in the R&D field, the environment was predominantly women-led, I would say that 75 %. Being part of medical affairs and in patients’ affairs (at least in our team) is 50-50 as the overall distribution in Pharma is about 50-50.there are some disproportions per department with functions like sales, IT, finance is more man representation, HR, clinical development are more woman.

Globally in Pharma at the executive level, whatever the function, this is represented mainly by men. So still some work to do for a more balanced and representation of woman

E: You previously managed programs and studies from Phase I up to Phase IV in areas like woman health. Could you tell us more about it?

P:Yes, I still remember during the interview I had for this position, my furtur boss asked me why I should be best placed to work in this department, and I remember saying that as a woman and scientist, I wanted to take care of our health condition. You know women’s health is a vast health area going to contraception, menopausal, osteoporosis, and endometriosis. And if you take condition like endometriosis that impact your life with pain during menses up to fertility issue that takes 9 to 12 years to be diagnosed or if you think about menopausal symptoms with hot flushes, a lot of people among the society still think that because you are a woman it is normal to have pain, impact in QoL and delaying diagnostic. And well, no, it is not normal to suffer in silence. There is an absolute TABOO around these conditions, and here I see the outstanding role of patients’ organizations. They have the crucialrole of encouraging all people to speak up!

E: How do you think women can make a difference in a leadership position – accelerating transformation?

P:Society is made of man and woman; it is made of diversity, so it is crucial that around the table at the executive level, women are also represented, as we bring our perspective. And this is true everywhere where diversity brings this perspective.

For us in Pharma, it is vital that when we discuss the patient condition, we have around the table all stakeholder Physician, Nurse, including patients, patient organization whenever possible so their voice, perspective is heard to development the best patient care together.

E: A wish for the future…

P:Thinking about women’s health, I would like to encourage women and future generations to speak up and do not be afraid of also stressing their diversities on the table. This is the only way to fight against all types of stigma.