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Study on Rare Diseases

Estudo 18-06-2024

There are around 36 million patients suffering from rare diseases in the EU. This in-depth analysis gives an overview of European actions for rare diseases to date and identifies opportunities and gaps for further EU level actions to improve diagnosis, care, and treatment for rare diseases. This document was provided by the Policy Department for Economic, Scientific and Quality of Life Policies at the request of the Committee on Public Health (SANT).

This report investigates how the EU should deal with shockflation - inflation unleashed by shocks to systemically significant prices such as energy and food. We argue that the ECB’s monetary policy is not an adequate instrument to deal with this kind of inflation. Therefore, the EU currently lacks adequate governance structures. The EU should develop a new inflation governance framework that targets shocks to systemically significant prices directly, before they are propagated through the economy ...

Academic freedom is a fundamental principle of any university and research system or institution, and is essential for a healthy democracy. The concept can be traced back to the birth of the Humboldtian research university model in Germany in the early 1800s. Despite international declarations and constitutional and legal protections, in recent years there has been renewed interest in academic freedom around the world owing to major challenges and threats from governments, industry and civil society ...

Amidst a changed global environment and with the goal to defend its geopolitical weight, the EU should provide public goods with EU value added, so that efficiency gains can be achieved at the EU level. We propose an expanded EU budget to serve the dual role of more automatic stabilisation and the provision of EU public goods, where the European Parliament should have an enhanced role in setting investment priorities. We discuss three such areas of investment priority – infrastructure, defence and ...

Este documento se integra en una serie de estudios que, desde una perspectiva de Derecho Comparado, tienen como objeto analizar la libertad de empresa en diferentes ordenamientos jurídicos. Tras una breve introducción histórica, así como la explicación de la normativa y la jurisprudencia de aplicación, se examinan el contenido, los límites y la posible evolución de tal libertad. El presente estudio tiene por objeto el caso de México. La libertad de empresa ha estado presente en la historia constitucional ...

This study analyses the absorption rates of the EU Cohesion Policy funds in 2014-2020 over time across funds (ERDF, ESF, CF, and REACT-EU), and across Member States and regions. It also provides a comparison with 2007-2013 absorption. A summary of absorption drivers, obstacles and undertaken solutions is presented based on the relevant literature and the findings of case studies. Conclusions and recommendations on improving the absorption of funds are set out.

Rare diseases – defined as diseases that affect no more than one person in 2 000 – currently impact between 30 and 35 million EU citizens. Limited patient volume hinders research on these diseases, to the detriment of understanding of their biology, recruitment to clinical trials and survival rates. Real-time sharing of primary health data within and between rare disease healthcare centres and across Member States is feasible but there are obstacles. This report focuses on childhood cancer as a rare ...

Air pollution is the single most significant environmental health risk in the European Union, causing chronic disease and premature mortality. Some 300 000 premature deaths are caused by fine particulate matter annually in the EU, and the annual economic cost of air pollution is at least €330 billion. Industrial plants are a significant source of air pollution, releasing a wide range of harmful pollutants that can seriously impact on human health and the environment. While previous research has examined ...

This in-depth analysis (IDA) examines the environmental determinants of health and their consequences, especially on the health of disadvantaged communities. It also assesses the impacts of European Union (EU) policies on the environment insofar as they affect human health, and provides recommendations on how the One Health and the Health in All Policies approaches can be better implemented in EU policy-making. This document was provided by the Policy Department for Economic, Scientific and Quality ...

Law and ICT

Estudo 30-04-2024

Exponential progress in the area of ICT improves access to data and information, which in its turn can lead to greater accessibility, reduced complexity, efficiency and respect of fundamental rights in policy, law making and implementation of law. Drafting and publication of laws need to be reformed from paper based format to modern digital media. Expertise, evidence and data should constitute mandatory elements of policy and law making. Ex-post quantified evaluation of legislation needs to be ...