
European Patients' Podcast: The Voice of Patients in Europe
By eupatientsforum

European Patients' Podcast: The Voice of Patients in EuropeApr 05, 2021

EAAD (European Antibiotic Awareness Day) - 18 November 2023 | With special guest Vivian Leung (ECDC)
Our guest in this episode of The EU Patients' Podcast is Vivian Leung, Antimicrobial Consumption Expert for the European Centre for Disease Prevention and Control (ECDC).
Vivian Leung works on the European Surveillance of Antimicrobial Consumption Network (ESAC-Net) and coordinates the surveillance of antibiotic consumption across EU/EEA countries. We met Vivian in the podcast last year as well to discuss the important topic of antimicrobial resistance.
In this episode, we delve once again into the topic of AMR as a global health priority, this time in light of 2023’s European Antibiotic Awareness Day.

PERISCOPE Talks
Welcome to the very last episode of PERISCOPE Talks, with a special guest: in this episode we welcome co-coordinator and strategy director of the PERISCOPE project Andrea Renda.
October 2023 marks the end of the project. A final conference took place on 8 September 2023. In this episode, we look back on what sparked the idea for PERISCOPE, some of the primary goals and focal points, and ways to ensure pandemic preparedness for the years to come.
Listen to more episodes of PERISCOPE Talks and other episodes here.

PERISCOPE Talks
Welcome to a new episode of PERISCOPE Talks. If you’re tuning in for the first time, the PERISCOPE project was launched in 2020 and investigates the broad socio-economic and behavioural impacts of the COVID-19 pandemic, to make Europe more resilient and prepared for future large-scale health risks.
In the context of PERISCOPE, the European Patients' Forum, in collaboration with project partners FEAM, CEPS, and INSERM, conducted a survey to assess the impacts of the COVID-19 pandemic on the welfare of patients with chronic diseases. The COVID-19 pandemic has posed significant challenges to patients, especially as healthcare services faced major disruptions and backlogs and the hospital environment became less safe.
A special thanks goes out to the co-authors of the survey report: Simon Ducarroz (INSERM), Juan José Fernández Romero, Emma Martinez (FEAM), and Timothy Yeung (CEPS).
To discuss the results of the survey, we have a chat with Anca Toma, Executive Director of EPF.

PERISCOPE Talks
Joining The EU Patients' Podcast today in PERISCOPE Talks special are Michele Calabrò and Marco Di Donato, respectively Director and Policy and Project Officer at EUREGHA, otherwise known as European Regional and Local Health Authorities. EUREGHA is a partner in the PERISCOPE consortium. EUREGHA is a network of 21 regional and local health authorities covering more than 10 different European countries. The organisation aims to promote collaboration amongst regions and local authorities, more specifically regional and local health authorities in Europe, within the framework of policies related to public health and healthcare. EUREGHA also establishes focused collaboration with the Institutions of the European Union and with the international and public organisations related to public health and healthcare throughout the world.
In this episode, we look back on the project's final conference that took place on 8 September 2023 in Brussels, explore the role EUREGHA played in developing the MOOCs (Massive Open Online Courses), and look at Euregional collaboration in pandemic preparedness in Europe.

World Patient Safety Day - 17 September 2023 | With special guest Niek Klazinga (OECD)
Welcome to our special World Patient Safety Day podcast episode.
In this episode, we welcome OECD's Niek Klazinga on the podcast. Niek Klazinga is a medical doctor by training and professor of social medicine at the Academic Medical Centre at the University of Amsterdam since 1999. Niek has been coordinating the Health Care Quality Indicator work of the OECD in Paris since 2007. Over the past 25 years, he has been involved in numerous projects and publications on quality of healthcare. Since his retirement in September 2022, he works as strategic advisor to the OECD’s HCQO programme, i.e., the Health Care Quality and Outcomes programme.
In this special episode of The EU Patients’ Podcast, we will talk about World Patient Safety Day, best practices to ensure patient safety is at the centre of healthcare systems, the OECD’s initiatives on identifying and promoting strategies to support cross-national sharing and learning of patient safety, and the new report on patient engagement in patient safety.

Project spotlight | EATRIS-Plus
This episode will bring into the spotlight one of our longstanding projects: EATRIS-Plus. EATRIS-Plus aims to build further capabilities and deliver innovative scientific tools to support the long-term sustainability strategy of EATRIS as one of Europe’s key research infrastructures for Personalised Medicine.
As the project will come to an end in December 2023, we invited Oriana de Sousa to sit with us and reflect how meaningful patient engagement took shape throughout all the activities of the project.
Oriana is a Patient Advisory Committee representative for the EATRIS+ Project. A survivor of rare cancer, she's now a Patient Advocate and EUPATI-certified Patient Expert. Oriana recently completed training in Scientific Innovation and Translational Research with EURORDIS. Her advocacy focuses on childhood, AYAs, and Small Cells Ovarian Cancer. She's part of the Rare Tumors of the Ovary network and Genomics in Oncology Patient Expert Network, and an Ambassador for the EU-CAYAS-NET Project. Oriana collaborates with diverse stakeholders, amplifying patient voices and championing a patient-centered approach.

Member focus: AOECS - Katre Trofimov on The EU Patients' Podcast
In this episode, we talk to EPF member AOECS' board director Katre Trofimov on marking Coeliac Disease Awareness Day, the issues that arise from underdiagnosis, inflation, and high food prices, reaching out to the research community, and the leverage of the ecosystem coming together. Join us for this interesting chat and subscribe to The EU Patients' Podcast for more on the latest in the world of patient advocacy.

PERISCOPE Talks
Today’s episode of the PERISCOPE Talks will discuss the contribution brought by Goethe University Frankfurt, with a particular focus on the online courses developed throughout the project.
Our guest today is Dennis Vetter from the Computer Science Institute, Goethe University Frankfurt. Dennis is a PhD student at the Frankfurt Big Data Lab at Goethe University Frankfurt. I He previously worked as a Machine Learning Engineer in the Netherlands and has a Bachelors and Masters degree in Computer Science. His research is focused on the application of artificial intelligence (AI) systems and the ethical implications of the AI decision making process.

PERISCOPE Talks
Today’s episode will discuss the work done in work package two by Karolinska Institutet, with a focus on the effects of the COVID-19 pandemic on mental health in several European countries.
Our guest today is Anna-Clara Hollander. She is an associate professor at the Karolinska Institutet and clinical psychologist studying how social risk factors affects psychiatric morbidity and mortality and utilization of psychiatric care. In the Periscope project, the Karolinska Institutet studies mental health and health inequalities in the context of the COVID-19 pandemic.

20 Years of EPF - Looking back with key figures from EPF history: Marco Greco
Twenty years ago, EPF was established to give a voice to the patient community in Europe. To mark this momentous milestone, EPF is proud to present its special series of the European Patients' Podcast! Join us on an exciting exploration into 20 years of EPF history with key figures who shaped EPF throughout the years. Together, we will celebrate best practices and successes achieved by patients over the years and look ahead towards a bright future for patients across Europe. Listen to our conversation with Marco Greco, EPF President.
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Project Spotlight ∣ EU-PEARL: the project comes to an end
The latest episode of the EU Patients’ Podcast is out now! In this episode, we are marking the end of the EU-PEARL project, an Innovative Medicines Initiative project, that has been working towards simplifying and standardising clinical trial platforms to make them more patient-friendly and efficient. Making clinical trials more efficient and patient friendly can ensure that individuals find the clinical trial that matches their needs, that companies enrol enough patients, and eventually, that new treatments are evaluated in better ways.
To mark the end of this initiative, we spoke with project partners, Annekatrin Krause and Mathieu Boudes. They will be sharing insights on EU-PEARL’s highlights, how patient engagement was incorporated throughout the project, and what the hopes are for the future, after the project's completion in April 2023.
Listen in for an informative discussion on how the EU-PEARL project is transforming clinical trials for the better. .
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EU-PEARL has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 853966-2. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.

20 years of EPF - Looking back with key figures from EPF history: Nicola Bedlington
Twenty years ago, EPF was established to give a voice to the patient community in Europe. To mark this momentous milestone, EPF is proud to present its special series of the European Patients' Podcast! Join us on an exciting exploration into 20 years of EPF history with key figures who shaped EPF throughout the years. Together, we will celebrate best practices and successes achieved by patients over the years and look ahead towards a bright future for patients across Europe. Listen to our conversation with Nicola Bedlington.
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PERISCOPE Talks
Today’s episode will focus on the COVID-19 ATLAS, a tool developed by the PERISCOPE team to provide advanced visual analytics about several aspects of the COVID-19 pandemic, with a focus on its impact on health, economy and society.
Our guest today, Vladimir Urošević, is the Development Manager of Belit. Vladimir has over 20 years of industry experience in all stages of software development, from requirements and system analysis, through solution design and architecture, programming and performance optimization to development team and project management. He has worked on the development of major IT infrastructure systems on national level in Serbia and in neighboring countries, in finance, public administration, e-health, energy efficiency, and other domains.

PERISCOPE Talks
We're back with Season 2 of the PERISCOPE Talks mini-series. Today we're discussing the Massive Open Online Courses (MOOCs), developed by the project partners, aiming to draw lessons from the COVID-19 pandemic and propose new ways forward for better crisis response.
Together with our guest today, Laure Guillevic, Policy Officer at the Federation of European Academies of Medicine (FEAM), we'll explore the some key aspects of the MOOCs.

Project Spotlight ∣ H2O: Strengthening the Patient Voice in Health Care
In today’s episode, we will discuss the Innovative Medicines Initiative ‘H2O: Health Outcomes Observatory’ project.
The Health Outcomes Observatory (H2O) is a public-private partnership drawing together patients, providers, researchers, industry and policy makers who share an interest in putting patients at the heart of healthcare.
H2O is set to transform the use of patient-reported information in health care, enrich the interaction between patients and health care providers and, as a result, drive better outcomes for patients.
To help us understand more about H2O and the value of patient reported outcomes, we’ve invited two guests today; Linetta Koppert and Jolanda Koenders, the country leads for H2O in the Netherlands.
Linetta is surgical oncologist at Erasmus Medical Center in the Netherlands and is at the forefront of incorporating patient-reported outcomes into patient care. She works with patient-reported outcomes within the conversation room for breast cancer since 2015. Jolanda is head of new product planning at Takeda and is committed to increase patients’ access to innovative medicine through sustainable collaborations on the national and European level.
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The Innovative Medicines Initiative is a partnership between the European Union and the European pharmaceutical industry, represented by the European Federation of Pharmaceutical Industries and Associations (EFPIA). It is working to improve health by speeding up the development of the next generation of medicines, particularly in areas where there is an unmet medical or social need. It works by facilitating collaboration between the key players involved in health research, including universities, research centres, the pharmaceutical and other industries, small and medium-sized enterprises (SMEs), patient organisations, and medicines regulators. IMI is the world’s biggest public-private partnership (PPP) in the life sciences. http://www.imi.europa.eu/

Sexual Health & Wellbeing and Young Patients - Looking back on STYPA 2022 with Amaranta and Ozla
In this 9th episode of The EU Patients' Podcast, we discuss the 2022 edition of EPF's STYPA programme with two of its participants. STYPA is our platform and annually recurring summer training course for young patients between the ages of 18 and 30. This year's edition of STYPA focused on sexual health and wellbeing for young patients, a topic that was chosen in line with a survey carried out by the EPF Youth Group. It showed us how many young patients experience body confidence issues, challenges in communication around intimacy with their partner or healthcare providers, and persistent taboos around sexuality and people with chronic conditions.
In 2022, 35 young patients from all over continental Europe met both online and in-person in Strasbourg. Between June and October, they talked about these important issues, and together, they developed a set of communication principles concerning young patients and sex.
Let Amaranta and Ozla tell you more!
Curious about STYPA? Or thinking about joining in 2023? Continue reading here.
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PERISCOPE Talks
We're back with Season 2 of the PERISCOPE Talks mini-series. Today we're discussing COVID-19 vaccine hesitancy across Europe.
Vaccination is a highly effective public health tool that has considerably reduced the global burden of infectious diseases. In the context of the COVID-19, vaccines have proved to be a successful tool to help fight the pandemic, saving numerous human lives. However, even though the COVID-19 vaccine has immense economical and public health benefits, it was it was reluctantly received in some European countries. To shed some light on this complex topic, Janina Steinert, PhD (Assistant Professor at Technical University of Munich), together with fellow researchers, conducted a study on vaccine hesitancy. She's joining us today in our podcast episode to discuss the results of their research.
To learn more about the PERISCOPE Project, visit the PERISCOPE website.

European Antibiotics Awareness Day with ECDC
European Antibiotic Awareness Day (EAAD) is a European health initiative coordinated by the European Centre for Disease Prevention and Control.
It provides a platform and support for national campaigns on the prudent use of antibiotics in the EU/EEA and takes place each year across Europe on 18 November.
EAAD is held in partnership with the World Antimicrobial Awareness Week, organised annually by the World Health Organization from 18 to 24 November.
Join us for an insightful discussion with Vivian Leung (ECDC antimicrobial consumption expert) on the events organised by ECDC to mark EAAD, but also about the most common misconceptions about antibiotic resistance.

Marking #WorldMentalHealthDay with the EU-PEARL project
World Mental Health Day is marked every year on October 10th – its an initiative of the World Health Organisation to raise awareness and mobilise efforts in support of mental health. This years’ theme is Make Mental Health & Wellbeing for all a Global Priority.
Today we will be speaking to members of the EU-PEARL project – an Innovative Medicines Initiative project aiming to make clinical trials more efficient and patient friendly by standardising and simplifying clinical trial platforms. EU-PEARL is initially focusing on four disease areas, including Major Depressive Disorder.
Our guests on today’s pod are Carmine Pariante and Fanni-Laura Mäntylä. Carmine Pariante is Professor of Biological Psychiatry at the Institute of Psychiatry Psychology and Neuroscience at King’s College London. He also co-leads EU-PEARL’s work in MDD. Fanni-Laura Mantyla is a communications professional and mental wellbeing activist. She was chair of the 5th European Health Parliament’s Committee on Mental Health and Healthy Workforce, and sits on the EU-PEARL Patient Advisory Group.

Member Focus: World Duchenne Organization
Each year, 1 in 5.000 newborn boys are born with Duchenne MD. It is estimated that there are 250.000 people living with Duchenne worldwide. The actual number can be higher as in some cases, Duchenne remains undiagnosed. In this episode, Suzie-Ann Bakker, Communication Manager at World Duchenne Organization (WDO), takes us through the ongoing and upcoming projects WDO is working on.

FH Paediatric Screening with Magdalena Daccord (FH Europe)
Familial Hypercholesterolemia (FH) is a very common condition and, in about 90% of cases, it remains undiagnosed until it's too late. In this episode, Magdalena Daccord, CEO of FH Europe, talks about how screening for FH helps save lives.

PERMIT Project Comes to an End
In today’s episode, we will discuss the Horizon 2020 ‘Personalised Medicine Trials’ or PERMIT project, which concluded at the end of June 2022. To help us understand more about the project, its aims and impact, and what comes next, we’ve invited Paula Garcia to speak with us today. Paula is Project Manager at ECRIN, the European Clinical Research Infrastructures Network, the organization that coordinated the PERMIT project.
On June 16th and 17th the PERMIT project consortium, personalised medicine experts, and other invested stakeholders met in Milan (and online) at the Istituto di Recherche Farmacologiche Mario Negri to discuss the recommendations that were developed over the 2.5 years of the project. PERMIT aimed to improve personalised medicines research by establishing recommendations based on a series of workshops held with experts in order to establish recommendations on methodology which can be widely accepted.
Personalised Medicine has enormous value for patients, as it can reduce trial-and-error treatments, enable better choices for determining which medications would be most effective, and it can help us also manage rising healthcare costs. By participating in PERMIT, EPF ensured the patient perspective and patient journey were considered throughout the workshops, and ultimately, the recommendations put forward by expert groups.
To learn more about the project, head to: https://permit-eu.org/
PERMIT has received funding from Horizon 2020, under grant agreement number 874825.

EPF Congress 2022 - Continuing the Conversation on Digital Transformation with Anca Toma
The European Patients’ Forum is pleased to announce the EPF Congress 2022 – Continuing the conversation on digital transformation will be held on 23 and 24 June 2022 in a live-streamed format.
This unique event will take place at the DoubleTree by Hilton, set in a prime location in the heart of Brussels, Belgium, with the option of participate online for those who wish to join us remotely.
All information on registration, programme, speakers, and more can be found on our dedicated website epfcongress.eu
Join us and hundreds expected to exchange on the path forward for integrated digitalised healthcare on 23 and 24 June for two days of learning, exploring, testing ideas, and co-creating solutions.

Advocating for Gender Equity in Neurology with EFNA
The International Day of Women, celebrated every year on 8 March, is the perfect occasion to imagine the potential of a world that is diverse, equitable, and inclusive. A world where difference is valued and celebrated. And there is no better day to celebrate women's achievements, to raise awareness against bias that affect them, and to take action for equality. This year, we are happy to talk about a great initiative from one of our members, EFNA - the European Federation of Neurological Associations.
EFNA’s Advocacy Awards will take place in May 2022. These awards recognise the contribution of an individual or group to the development and promotion of advocacy for people with neurological disorders in Europe. On this occasion, the awards will focus on the topic of ‘Advocating for Gender Equity in Neurology'. Find out more about the Awards here: www.efna.net/advocacyawards2022
On 8 March, EFNA also launched a new survey, 'Assessing diagnosis and care pathways of people living with neurological disorders in Europe'.
This survey has been developed with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway. Data generated through this survey can be used to address the unmet needs and challenges facing all affected by neurological conditions.
You can access the survey here: https://www.surveymonkey.com/r/JQW27L2
Deadline for completion of the survey is Tuesday, April 19th.

Rare Disease Day 2022 with EURORDIS Anna Kole
Celebrated every year on 28 February, Rare Diseases Day was launched in 2008 by EURORDIS to reflect and raise awareness on rare diseases and their impact on patients’ lives.
There are over 300 million people worldwide living with a rare disease. 72% of rare diseases are genetic, and of these genetic diseases 70% start in childhood.
There is no cure for most of these disorders and few treatments are available for those who are affected. EURORDIS works towards more equitable access to diagnosis, treatment, care, and social opportunity.
The theme for Rare Disease Day 2022 is SHARE YOUR COLOURS!, and today we asked Anna Kole, Public Health Policy Director at EURORDIS to explain more about it.
For more information on Rare Disease Day 2022 you can check the dedicated website www.rarediseaseday.org, and follow with #RareDiseaseDay on Facebook, Instagram, and Twitter for more content.

Sexual Health & Wellbeing of Young Patients with EPF Youth Group
It is our 24th and final episode for Season One, so get ready for a good one.
On today’s episode, we’re discussing the EPF Youth Group Sexual Health and Well-Being Project. First a few words about the EPF YG – the Group is made out of 9 members currently, coming from all over Europe and rep different diseases
We’re here today to find out why is it so important to talk about the sexual lives and well-being of young patients? What are their concerns?
To get answers to all of these questions, we’ve invited Cornelia Pauna and Bianka Tomozer, members of the EPF Youth Group to join us.
For more information on the EPF Youth Group, visit their website.
Thanks for joining us for Season One of the EU Patients' Podcast. We'll see next year.
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PRE-REGISTER for EPF Congress 2022, taking place from 21-22 April 2022.

PERISCOPE Monthly Talks #8 - Data Atlas Project with Enea Parimbelli
Today, we continue with final episode of our first seasion of the project mini-series, the PERISCOPE Monthly Talks.
If you don’t recall or are a first time listener, the PERISCOPE project was launched in late 2020 and investigates the broad socio-economic and behavioural impacts of the COVID-19 pandemic, in order to make Europe more resilient and prepared for future large-scale risks.
Today’s episode will focus on the COVID Data Atlas, and our guest today is Enea Parimbelli, the Assistant Professor of Bioengineering at the University of Pavia. Enea is coordinating efforts of PERISCOPE's Work Package 4 whose main product is the Data Atlas: an integrated data repository for COVID-related information enabling analysis and knowledge discovery.
The PERISCOPE Monthly Talks will now take a holiday break as we’ll begin again in January 2022 with the second season. You can stay up to date on all things PERISCOPE by visiting their website www.periscopeproject.eu or follow them on Twitter, Linkedin and Instagram.
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Want to continue the conversation on digital transformation? PRE-REGISTER for our follow-up Congress on 21-22 April at www.epfcongress.eu

Fertility Week with Satu Rautakallio-Hokkanen of Fertility Europe
On today’s episode, we’re discussing Fertility Week. During the European Fertility Week 2021, Fertility Europe aims to put the spotlight on the issue of male infertility taking initial steps to change the perception of male infertility issues in society to gradually reduce stigma and normalise the discussion around male infertility and sexual health in all European countries.
Our guest today is Satu Rautakallio-Hokkanen, Chair of Fertility Europe.
For more information about Fertility Europe and their initiatives, visit their website: https://fertilityeurope.eu/ or follow the conversation online using #EuropeanFertilityWeek and #ChallengeTheOdds

PERISCOPE Monthly Talks #7 - Prof. Giuseppe Costa
On today's episode of the PERISCOPE Monthly Talks mini-series, we're discussing health inequalities with regard to the COVID-19 Pandemic.
Joining us today is Professor Giuseppe Costa, Professor of Public Health (Department of Clinical and Biological Sciences, University of Turin, Italy). He is a leading expert on health inequalities, overseeing FEAM contributions to the joint report on the impacts of COVID-19 on health inequalities in Europe. On September 29, at the Workshop on the impacts of COVID-19 on health inequalities in Europe, which will look at the report's findings, he gave a keynote speech, speaking on "Assessing the impacts and learning from the pandemic in terms of health inequalities."
To learn more about the PERISCOPE Project, visit the PERISCOPE website.

Liver Cancer Awareness Month with ELPA's Marko Korenjak
On today’s episode, we’re discussing Liver Cancer Awareness Month, a global initiative working to raise understanding of this devastating disease and educate us about the signs and symptoms.
In 2020, more than 900,000 people were diagnosed with liver cancer globally, and more than 830,000 people died from the disease in the same year.
We’re joined by Marko Korenjak, President of the European Liver Patients Association (ELPA) to talk about the month and the different initiatives that they have undertaken to educate all Europeans about the third most common cause of cancer death globally.
For more information about ELPA, visit elpa.eu
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Registration for the virtual EPF Congress 2021 closes on 22 October. There's still time to join us to explore the digital transformation of healthcare.

Patient Health Data with The BMJ's Emma Doble (EPF Congress 2021)
As you may know, we’re hosting our virtual EPF Congress 2021 from the 26-29 of October. Over the course of four days, we’ll examine the digital transformation of healthcare and highlight the added value of patient partnerships.
Today, we’re speaking with one of our Congress partners, the BMJ. Founded in 1940, the BMJ is now much more than just a high impact medical journal, it’s also a champion of better research, clinical practice & healthcare policy. As a Congress partner, they will be co-leading a plenary session on the 27th October on Health Data between access, control and ownership.
We’re joined by BMJ Patient Editor Emma Doble to give us a brief glimpse into their session to see the pros, cons, challenges and impact of #healthdata on patients’ lives.
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Still time to register for the EPF Congress 2021. Please visit epfcongress.eu

PERISCOPE Monthly Talks #6 - Health Governance with Timothy Yeung
Today, we continue with our project mini-series, the PERISCOPE Monthly Talks.
Our guest this month is Timothy Yeung, with whom we will talk about health governance during the pandemic.
Timothy Yeung is a Researcher at the Centre for European Policy Studies (CEPS) and Associate Researcher at the Leuven Center for Empirical Jurisprudence of KU Leuven in Belgium.
To learn more about the PERISCOPE Project, kindly visit www.periscopeproject.eu
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The #EPFCongress2021 is just over a month away and registration is still OPEN. Programme and Registration details can be found on www.epfcongress.eu Join us to explore the digital transformation of healthcare and understand the added value of patient partnerships.

FH Awareness Day with FH Europe's Magdalena Daccord
Today, we’re discussing Familial Hypercholesterolemia (FH) Awareness Day, which takes place every year on 24 September.
FH Awareness Day was established in 2012 by the FH Foundation to raise awareness of familial hypercholesterolemia worldwide during Cholesterol Education Month. Millions of people around the world do not know that they and their families are at severe risk for early heart disease, heart attacks, and even death. Yet, with early diagnosis and treatment, individuals diagnosed with FH can reduce their risk for heart disease by 80%.
To help us learn more about the condition and this year’s FH Awareness Day, we’ve invited Magdalena Daccord, CEO of our member FH Europe, on the pod today. Together with its member network, FH Europe raises voices in its local communities, in clinics, and on social media in order to help people #KnowFH.
To get involved and support the cause, please visit www.fheurope.org and use the hashtag #FindHF and #FHAwaree on social media.
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The #EPFCongress2021 is just over a month away and registration is still OPEN. Programme and Registration details can be found on www.epfcongress.eu Join us to explore the digital transformation of healthcare and understand the added value of patient partnerships.

#WorldPatientSafetyDay with PAQS' Quentin Schoonaere
Today, we’re discussing a cause that is quite important to us, World Patient Safety Day, which takes place every year on 17 September. This year’s theme is “Safe maternal and newborn care”. #WorldPatientSafetyDay was established in 2019 to enhance global understanding of patient safety, increase public engagement in the safety of health care and promote global actions to enhance patient safety and reduce patient harm.
To help us learn more about patient safety and this year’s theme, we’ve invited Quentin Schoonvaere, Data and Improvement Officer from Platform for Continuous Improvement of Quality of Care and Patient Safety (PAQS) on the pod today.
Created in 2013, PAQS aims to promote, support and organise the development and implementation of initiatives of continuous quality of care and patient safety improvement in Brussels and Walloon healthcare institutions. For more information about PAQS, please visit their website: www.paqs.be
EPF along with PAQS appeal to all healthcare institutions to encourage them to share their best practices in terms of patient safety. During the continuing challenges of the COVID-19 pandemic, a combination of virtual and other activities are being planned by WHO to observe and celebrate the Day in September 2021. The signature mark of the global campaign is to light up iconic monuments, landmarks, and public places in the colour orange.
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Registration is still open for the virtual EPF Congress 2021, which is less than two months away. The preliminary programme is now available at www.epfcongress.eu. If you haven’t registered yet, please do so and join us to explore the digital transformation of healthcare.

All about EHDEN, Part 3: Academy 101 Course Launch
Podcast Part III on European Health Data Evidence Network, or EHDEN for short.
More interested in the topic of health data? Do you want to understand more about health data governance, and how real world insights are harnessed at scale?
In this episode, we are joined by Nigel Hughes, an expert in Real World Data/ Real World Medicine. He is the Scientific Director at Janssen Research and Development, and the EHDEN project Lead.
Nigel helps us to understand key concepts around data privacy, and what comes next for the EHDEN project, including a special announcement …

World Duchenne Awareness Day with World Duchenne Organization (WDO)
7 September is World Duchenne Awareness Day.
In today’s episode, we speak with Elizabeth Vroom and Nicoletta Madia from the World Duchenne Organization on the importance of celebrating World Duchenne Awareness Day and raise awareness on Duchenne and Becker muscular dystrophy.
This year’s theme for World Duchenne Awareness Day is Adult Life & Duchenne - As life expectancy of people affected by Duchenne MD has increased significantly in the past decades, adults living with the disease are not an exception anymore.
To get involved and support the cause, you can visit www.worldduchenne.org or the dedicated website for the World Duchenne Awareness Day, www.worldduchenneday.org, where you can find more information on this year’s theme and activities.

PERISCOPE Monthly Talks #5 - Mental Health Impact of COVID-19 with Prof. Walter Osika
We're back with another episode of the PERISCOPE Monthly Talks. Last month, we discussed the economic impact of COVID-19. This month, we’ll take a look at the effects of the pandemic on mental health.
To discuss this topic, we’ve invited Professor Walter Osika. He is co-founder and director of the Center for Social Sustainability, as well as an Associate Professor at the Department of Clinical Neuroscience, in Karolinska Institutet, Sweden. He is also a physician specialised in Internal Medicine, Cardiology & Psychiatry, and a Consultant at Northern Stockholm Psychiatry. Furthermore, he has authored books on stress, psychosomatic medicine, and mental training.
For more information about the PERISCOPE Project, we kindly remind you to check out the website www.periscopeproject.eu

EPF Congress 2021 and Patient Co-Production with EIT Health CEO Jan-Philipp Beck
As we lead up to our virtual #EPFCongress2021 in October, we’ll be chatting with various speakers, partners and participants about key topics regarding digital health and the patient experience.
Today, we speak with one of our Congress partners, EIT Health. Funded by the European Commission, EIT Health brings together the worlds of business, research and education, to help enable the life-changing health innovation that Europe needs. As a Congress partner, they will be co-leading a plenary session on Patient Co-Production and Design.
We’re joined by EIT Health’s CEO Jan-Philipp Beck to discuss how health systems can embrace digital health, the role of patients and his hopes for the Congress.
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Registration is OPEN for our EPF Congress 2021, and we’re granting FREE registration to patient advocates and health NGOs who register before 1 September. All programme and registration details can be found at www.epfcongress.eu.

World Brain Day with EMSP's Emma Rogan
Today, we’re discussing World Brain Day, which takes place every year on 22 July. This year’s theme is Stop Multiple Sclerosis. MS is a neurological disease impacts every aspect of a person's life, with effects ranging from cognitive impairment to significant physical disability.
To help us learn more about the condition and this year’s World Brain Day, we speak with Emma Rogan from the European Multiple Sclerosis Platform, on the pod today. Emma joined EMSP in 2014 and works on Campaigns and External Engagement, outreach to young people with MS and supporting her great team on other EMSP initiatives.
A message from the European Multiple Sclerosis Platform (EMSP):
Stand with the 1 million+ people with MS in Europe. Use the #WorldBrainDay on the 22nd July, sign up to the EMSP newsletter on EMSP.org and get active in our campaigns to ensure quality care for people with MS in Europe and across the world.
On the 22nd July, EMSP is launching a more interactive and functional MS Barometer platform where people can compare country scores and learn key pieces of data. Visit https://msbarometer.eu/
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Registration is open for the #EPFCongress2021 on the digital transformation of healthcare. The event is free for EPF members and we're offering free registration to patient advocates and health NGOs before 1st September. All registration and programme details available at epfcongress.eu.

PERISCOPE Monthly Talks #4 - Economic Impact of COVID-19 with CEPS' Daniel Gros
On this month's episode of the PERISCOPE Monthly Talks, we take a look at the economic impact of the COVID-19 pandemic and understand the positives and negatives of Europe’s actions.
Our special guest today is Daniel Gros who has written several articles and thought pieces regarding the financial and political impacts of the pandemic since last year. He is a Member of the Board and Distinguished Fellow at the Centre for European Policy Studies (CEPS). Prior to joining CEPS, Daniel worked at the IMF and at the European Commission as economic adviser to the Delors Committee that developed the plans for the euro.For more information about the project, please visit the PERISCOPE website.
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REGISTRATION IS NOW OPEN for our virtual EPF Congress 2021, taking place on 26-29 October. The event will focus on the digital transformation of healthcare to highlight the added value of patient partnerships.
Registration is FREE for EPF Members and we’re granting free registration to patient advocates and health NGOs before September 1st so reach out to us at congress@eu-patient.eu for your free registration code.

World Continence Week with WFIPP's Mary Lynne Van Poelgeest
Today, we’re diving into the awareness-raising campaign known as World Continence Week (21-27 June 2021).
World Continence Week (WCW) is an annual initiative devised and managed by our member the World Federation of Incontinence and Pelvic Problems (WFIPP), with the approval of the International Continence Society. It is a global initiative intended to raise awareness of bladder weakness, pelvic pain and other debilitating conditions which impact greatly on the lives of patients and carers.
To help us learn more about the condition and the week, we’ve invited WFIPP President Mary Lynne Van Poelgast on the pod today. Mary Lynne is a long-standing international patient advocate promoting the rights of patients at both national and international levels.
- Learn More: https://wfipp.org/world-continence-week-2021/
- Registration: https://wfipp.org/wcw-2021-registration/
- Programme: https://wfipp.org/app/uploads/2021/06/WebinarProgramme9June-compressed.pdf
- Toolkit: https://wfipp.org/resource/world-continence-week-2021-toolkit/
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Registration is NOW OPEN for our EPF Congress 2021, taking place on 26-29 October in a virtual setting. The event is free for all EPF members and we’re granting FREE registration to patient advocates and health NGOs who register before 1 September at www.epfcongress.eu

Medication-Related Patient Safety with Tjaša Zajc
On today’s episode, we focus on medication-related patient safety.
Our guest today is Tjaša Zajc, a patient, healthcare journalist and host of the Faces of Digital Health Podcast. She currently runs the MedsClub - community is an international group of pharmacists, doctors, and nurses exploring best practices in how technology can aid medication-related patient safety.
Most recently, she has produced a documentary called (OVER)DOSE - How can we prevent medication errors?, set to premiere on June 29.
In this talk, we dive into the idea behind the documentary, and some of the insights presented in the movie.
For more information regarding the documentary, visit https://www.facesofdigitalhealth.com/.
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Registration is NOW OPEN for our EPF Congress 2021, taking place on 26-29 October in a virtual setting. The event is free for all EPF members and we’re granting FREE registration to patient advocates and health NGOs who register before 1 September at www.epfcongress.eu

Impact of COVID-19 on Liver Patients (COBALT Study) with Dr Gautam Mehta
On today’s episode we examine the impact of the COVID-19 pandemic on liver patients and delve into the COBALT Study to examine vaccination measures in relation to liver patients.
The COBALT study urgently addresses how effective the current COVID-19 vaccines are for liver patients with the data used to report back quickly to inform patients and policy-makers.
To help explain the COBALT Study and its impact on liver patients, we’ve invited the leader of the Europe-wide COBALT study Dr. Gautam Mehta on the pod today.
Dr. Gautam Mehta is Associate Professor in Hepatology at UCL. He has a research interest in Covid-19 and liver disease, has published work on inflammatory mechanisms in Covid-19.
For more information regarding the COBALT Study or the European Liver Patient Association (ELPA), kindly visit their website: www.elpa.eu

International Day of Action for Women's Health with Europa Donna
28 May is the International Day of Action for Women’s Health, celebrated every year to address the multiple causes of disease and death that affect women all over the world.
Today’s episode features a discussion with Barbara Klein, the Communications Officer for Europa Donna - The European Breast Cancer Coalition, to help us better understand the reality of breast cancer and what it means to have access to quality health care for European women.

PERISCOPE Monthly Talks #3 - Modelling Vaccination Roll-Outs with Dr Raffaele Bruno
Last month, we discussed the importance of data for forecasting, particularly with the European Covid-19 Forecast Hub and today we’ll focus on modelling vaccination rollouts and the requirements for non-pharmaceutical interventions during the COVID-19 pandemic.
To help understand the modelling of vaccination roll-outs, we’ve invited Dr. Raffaele Bruno, who recently co-authored an study in NATURE on “Modeling vaccination rollouts, SARS-CoV-2 variants and the requirement for non-pharmaceutical interventions in Italy”.
Dr Raffaele Bruno is the Director of Infectious Diseases (PoliClinico San Matteo) and a Professor of Infectious Diseases, University of Pavia.
If you don’t recall or are a first time listener, the PERISCOPE project was launched in late 2020 and investigates the broad socio-economic and behavioural impacts of the COVID-19 pandemic, in order to make Europe more resilient and prepared for future large-scale risks.
For more information on PERISCOPE, visit www.periscopeproject.eu

World IBD Day with EFCCA's Isabella Haaf
Today, we focus on World IBD Day.
IBD, which stands for inflammatory bowel disease (including Crohn’s disease and ulcerative colitis) are two serious, chronic digestive diseases that affect five million people worldwide. There is no cure, no known cause, and little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.
Every year on 19 May, World IBD Day is led by patient organisations representing over 50 countries on five continents and is coordinated by our member the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). The European Federation of Crohn's & Ulcerative Colitis Associations is an umbrella organisation representing 36 national patients' associations.
Joining us today to discuss World IBD Day is Isabella Haaf, the Deputy Director from EFCCA.
To get involved or gather more information about World IBD Day, kindly visit www.worldibdday.org.
#worldibdday2021 #breakthesilence

European Mental Health Week with MEP Alviina Alametsä
Mental health matters now more than ever.
Today, we celebrate the start of the European Mental Health Week - a pan-European initiative that aims to raise awareness about the importance of mental health in our everyday lives. Set up and run by our member at Mental Health Europe (MHE), the second edition of the European Mental Health Week will continues from today until 16 May 2021.
This year’s theme is ‘Mental Health Matters’ and will shine a spotlight on mental health as a high-profile societal issue as well as a deeply personal experience for everyone during the pandemic.
Our guest today is Alviina Alametsä, a Finnish politician of the Green League who has been serving Member of the European Parliament since 2020. Alviina is also a Co-Chair of Mental Health Europe’s Coalition for Mental Health and Wellbeing in the European Parliament and works to amplify the voices of people with mental health problems and advocate for a coordinated response to address the most pressing determinants of mental health at the European level.
We urge you all to use your voice and act for mental health. With your support, we can continue to improve mental health in Europe for all.
For more information regarding the European Mental Health Week or Mental Health Europe, kindly visit their website: www.mhe-sme.org

Patient-Reported Outcome Measures (PROMs) in HIV R&D with EATG
On today's episode of the EU Patients' Podcast, we catch up with our member, the European AIDS Treatment Group (EATG), to discuss patient advocacy within the HIV community.
EATG has recently published a research document called “PROMs in HIV research and development: analysis of community needs and engagement”. The purpose of the work is to describe the current use of PROMs in HIV research and development as well as to inform an advocacy agenda to guide the use and development of PROMs, highlighting the role of communities living with or affected by HIV.
To help provide greater insight on the use of patient reported outcome measures (PROMs) for the development of new HIV medicines, we’ve invited the main author of the research document, Kevin Moody and Alain Volny-Anne, who is a member of EATG and participant in the development of the work through the EATG PROMise Task Group.
Founded in 1992, the European AIDS Treatment Group (EATG) is a network of 150 members from 45 countries in Europe. They are a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections and represent the diversity of more than 2.3 million people living in Europe. To learn more about EATG, visit their website www.eatg.org
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for more information about the European Patients' Forum (EPF), visit our website: www.eu-patient.eu

PERISCOPE Monthly Talks #2 - EU COVID-19 Forecast Hub
In this episode of the PERISCOPE Monthly Talks, we touch upon the importance of data for forecasting, particularly with the European Covid-19 Forecast Hub which provides short-term forecasts of Covid-19 cases and deaths across Europe, coordinated by the European Centre for Disease Prevention and Control.
PERISCOPE has recently collaborated with the European Forecast Hub through the University of Pavia, by providing metadata with information on methodology, as well as forecasts for four weeks for EU’s largest countries (France, Italy, Germany and Spain). The plan is to expand this collaboration to other EU countries.
To help discuss the European COVID-19 Forecast Hub, we’ve invited Helen Johnson, Expert of Mathematical Modelling from the European Centre for Disease Prevention and Control. Please visit their website: https://covid19forecasthub.eu/
For more information about PERISCOPE, please check out their website www.periscopeproject.eu for all relevant news and information.

European Health Union Manifesto with Dr. Vytenis Andriukaitis
On World Health Day, we decided to talk about the Health Union Manifesto and its impact on patients.
In late 2020, a Manifesto was drafted by high-level health policy experts calling on the political leaders of Europe to commit to creating a European Health Union (EHU) beyond the crisis. It invites the people of Europe to engage in building a health policy that contributes to the long-term sustainable development of the European Union (EU).
The Manifesto sets out a vision to build a European Health Union where all people are as healthy as they can be throughout their lives.
Our special guest today is Dr Vytenis Andriukaitis. He is the WHO Special Envoy for the European region as well as the former European Commissioner for Health and Food Safety (2014-2019), former Minister of Health of Lithuania and Member of the Lithuanian Parliament for six mandates. He led the Lithuanian delegation to the Convention on the Future of Europe and is one of the initiators of the European Health Union Manifesto.
For more information, please visit: https://europeanhealthunion.eu/