European Patients' Podcast: The Voice of Patients in Europe

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. 💻Follow EPF!   Twitter - @eupatientsforum LinkedIn - /europeanpatientsforum  Facebook - /EuropeanPatientsForum

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. 

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. 

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. . . . 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/

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. 💻Follow EPF!   Twitter - @eupatientsforum LinkedIn - /europeanpatientsforum  Facebook - /EuropeanPatientsForum

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 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. 

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.

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.  

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. 

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.

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.

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.

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.

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. ---------------------------- PRE-REGISTER for EPF Congress 2022, taking place from 21-22 April 2022.

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. --------- Want to continue the conversation on digital transformation? PRE-REGISTER for our follow-up Congress on 21-22 April at www.epfcongress.eu 

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

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. 

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 --------------- 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.  www.epfcongress.eu 

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. ------------ Still time to register for the EPF Congress 2021. Please visit epfcongress.eu 

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  ---------- 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.

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. ------ 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.

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. ---------------------------------------------------------------------------------------------------------------- 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.

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 …

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.

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

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. ------------------------------------------- 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.

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/ ---------------------------------------------------------------------------------------- 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. 

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. ------------------------------------------------------------------------------------------------------------------------- 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.

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/ ------------------------------------------- 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

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/. --------------------------------- 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

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

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.

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

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

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

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  ======================================================================== for more information about the European Patients' Forum (EPF), visit our website: www.eu-patient.eu 

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.

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/ 

Part 2 of a 3 part series on the European Health Data Evidence Network, or EHDEN for short. Are you curious to understand the journey from health data to health outcomes?  In this episode, we are joined by Daniel Prieto Alhambra, an expert in Real World Evidence and Open Science. He is Professor of Pharmaco- and Device Epidemiology at the Oxford University, and the Research Coordinator of the EHDEN project. Daniel helps us understand just what is done with health data to turn into meaningful outcomes, and why EHDEN needs the support of data partners to make this happen. 

If you are serious about health, you should be serious about nutrition. This episode focuses on the several elements that are crucial to advancing European nutrition and health policy, such as nutritional screening, access to nutritional care, patient-friendly language and meaningful patient involvement. To help provide the patient perspective on Nutrition, we speak with patient expert and advocate Cees Smit to join us. Cees is the founder of Platform Patiënt en Voeding' (in English Patient and Food) with the aim that nutrition becomes part of an integral medical intervention and prevention strategy. He’s also published a book ‘Patient Perspectives on Nutrition’ and has co-organised conferences with EPF on The relevance of nutrition for EU patient groups'. Late last year, he published his own autobiography ‘Surviving hemophilia’. To view Cees' work, please visit his website.

Part 1 of a 3 part series on the European Health Data Evidence Network, or EHDEN for short.  Are you curious to learn the basics of health data? How we use health data today, and how to maximise its potential for tomorrow? In this episode, we are joined by Peter Rijnbeek, Associate Professor of Health Data Science at the Department of Medical Informatics of the Erasmus MC, The Netherlands, and EHDEN project coordinator.  Peter helps us understand some basic health data concepts central to EHDEN , and helps us to frame why a project like EHDEN is crucial to harnessing the insights and evidence available from real-world clinical data at scale. 

We officially begin our project mini-series, the PERISCOPE Monthly Talks. You may recall that our first ever podcast episode focused on the launch of the project, and now, we’ll conduct a monthly discussion with relevant stakeholders to talk about interesting and relevant updates regarding the PERISCOPE project. 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. We speak with PERISCOPE project coordinator Paolo Giudici about the role of data and data analysis in understanding the effects of the COVID-19 pandemic. Paolo Giudici is a Professor of Statistics at the University of Pavia, a Financial data scientist and coordinator of another European project, FINTECH Risk Management.

Today’s episode focuses on #RareDiseaseDay which takes place on the last day of February each year (28 February 2021). The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. Since Rare Disease Day was first launched in 2008 by our member EURORDIS, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. The campaign started as a European event and has progressively become a world phenomenon, with the participation in over 100 countries all over the world in 2020.  We speak with Simona Bellagambi from the Italian Federation of Rare Diseases (UNIAMO) and the member of the EURORDIS board. Simona was specifically appointed to oversee the design of the Rare Disease Day (RDD) campaign and gives us a preview of what to expect this year. To participate or learn more about the day, simple visit the Rare Disease Day website.

Today’s episode will focus on the European Patients Academy on Therapeutic Innovation, better known as EUPATI. We speak with Executive Director Maria Dutarte and Network and Communications Officer Amanda Lyons about the recent launch of their Open Classroom and the future of the organisation.  As the only dedicated training provider for patients and patient advocates on the end to end process of medicines research and development, EUPATI continues to be one of the key drivers of the public and citizens’ debate on this topic at a pan-European level, bringing together all stakeholder groups. For more information, please visit the EUPATI website. Please mark your calendars from 26-29 October as we've recently announced our Congress 2021. Our second patient-led Congress will be completely virtual with registrations opening in April. For all news related to the Congress, please visit the EPF Congress 2021 website. 

Today’s episode focuses on the launch of Europe’s 'Beating Cancer Plan’ and World Cancer Day. Every year, 3.5 million people in the EU are diagnosed with cancer, and 1.3 million die from it. Over 40% of cancer cases are preventable. Without reversing current trends, it could become the leading cause of death in the EU. In January 2020, the European Commission announced its intention to put forward a Europe's Beating Cancer plan. Europe's Beating Cancer plan will set out actions to support, coordinate or supplement Member States' efforts at every stage of the disease, including prevention; early detection and screening; treatment and care; and the quality of life of patients, and carers. On 3 February, The Commission launched its EUR 4 billion 'Beating Cancer Plan' to coincide with World Cancer Day (4 Feb). To help us understand the Beating Cancer Plan from the patient perspective and celebrate World Cancer Day today, we’ve invited Project Manager Alfonso Aguaron from our member Lung Cancer Europe (LuCE) to join us. Lung Cancer Europe is the voice of lung cancer patients, their families and survivors at a European level. LuCE provides a European platform for already existing lung cancer patient advocacy groups and supports the establishment of national lung cancer patient groups in different European countries where such groups do not yet exist. Visit lungcancereurope.eu For more information about EPF, please visit our website. 

With the success of the first Congress in 2019, EPF would like to announce its forthcoming second iteration  in 2021 under the broad theme of digital transformation of healthcare. The EPF Congress 2021 will take place between Oct 26-29, 2021, in a completely virtual setting. To help give some context and greater insight regarding the EPF Congress 2021, we speak with EPF President Marco Greco and EPF’s Director of Policy, Kaisa Immonen. For more information on the EPF Congress 2021, visit www.epfcongress.eu  You can stay up to date on all EPF news by visiting us on www.eu-patient.eu 

Today’s episode will focus on a source of hope and contention in Europe and the world at the moment, the COVID-19 vaccine. The vaccine has already begun the roll-out phase in North America and the UK but has only been approved for Europe this week following the recommendations of the European Medicines Agency and approval by the European Commission. Eligible Europeans should begin receiving the BioNTech/Pfizer vaccine beginning on 27 Dec. We’ll take a look at the role and decision-making process of the European Medicines Agency and the European Commission and what it means for the continent and you. Our guest is Prof. Vincenzo Salvatore, a lawyer and leader of BonelliErede's Focus Team Healthcare and Life Sciences. He is also a full professor of European Union law at the University of Insubria. He also directed the legal service of the European Medicines Agency for 8 years. For more information regarding BonelliErede, please visit belex.com The EMA will hold a second public stakeholder meeting on the approval and roll-out of #COVID19 vaccines in the EU on 8 January 2021. You can visit their website.  For more information on EPF, please visit our website www.eu-patient.eu. 

Our very first episode! We focus on EPF’s latest project PERISCOPE (PAN-EUROPEAN RESPONSE TO THE IMPACTS OF COVID-19 AND FUTURE PANDEMICS AND EPIDEMICS), which launched in November 2020, PERISCOPE will investigate the broad socio-economic and behavioural impacts of the COVID-19 pandemic, to make Europe more resilient and prepared for future large-scale risks. To help give greater insight and context, we invited PERISCOPE project coordinator, Andrea Renda to join us on the pod. Andrea Renda is a Senior Research Fellow and Head of Global Governance, Regulation, Innovation and the Digital Economy (GRID) at CEPS, a leading think tank and forum for debate on EU affairs. For more information on the PERISCOPE project, visit www.periscopeproject.eu. You can stay up to date on all EPF news by visiting us on www.eu-patient.eu