The EU Patients' Podcast

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 26-28, 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