Feed aggregator

The first CAP simplification package followed a wave of farmer protests across the EU and was deemed politically urgent by the Commission

Plus Omnibus compromise, a sneak-peek on Monday's defence Foreign Affairs Council, and dispatches from the European Space Agency summit in Bremen

In today's edition: Donazzan's Space Act, CSAM file moves, Shein RFI

The world is moving away from a single, post-2000 consensus around multilateralism and poverty reduction. What replaces it depends on which coalition wins the argument, and then bakes that argument into institutions and finance. So what are the visions for the global development architecture in 2030 that we see? One is ‘Aid Retrenchment with Nationalist Conditionality’. Assistance is folded into foreign, trade, and interior policy. Grants shrink, multilateral agencies are sidelined, and cooperation becomes bilateral deals tied to migration control, geopolitical alignment, or access to minerals. Rights, gender, and climate justice recede. A second world is ‘Strategic Multilateralism’. The multilateral development banks stay central, but their remit narrows to macro-stability, crisis response, and “risk containment”. Concessional finance is rationed to countries seen as fragile or geostrategic. Aid rhetoric turns technocratic and securitised and health framed as biosecurity. A third vision is ‘Pluralist Development Cooperation’. There is no single system, but many partially overlapping regimes: Chinese, Indian, Gulf, regional, and club initiatives. Low and middle income countries gain bargaining space by choosing across offers. The trade-off is fragmentation. Rules on debt workouts, safeguards, and transparency diverge, and global public goods struggle for predictable funding. Finally, a fourth vision is ‘Global Solidarity 2.0’. Development cooperation is rebuilt around shared risks such as climate stability, pandemics, antimicrobial resistance, and debt contagion. North and South co-lead a pooled Global Public Goods Facility. Contributions reflect income and carbon profile, and access reflects exposure to cross-border risk. The donor-recipient binary fades, even if frictions persist.

The world is moving away from a single, post-2000 consensus around multilateralism and poverty reduction. What replaces it depends on which coalition wins the argument, and then bakes that argument into institutions and finance. So what are the visions for the global development architecture in 2030 that we see? One is ‘Aid Retrenchment with Nationalist Conditionality’. Assistance is folded into foreign, trade, and interior policy. Grants shrink, multilateral agencies are sidelined, and cooperation becomes bilateral deals tied to migration control, geopolitical alignment, or access to minerals. Rights, gender, and climate justice recede. A second world is ‘Strategic Multilateralism’. The multilateral development banks stay central, but their remit narrows to macro-stability, crisis response, and “risk containment”. Concessional finance is rationed to countries seen as fragile or geostrategic. Aid rhetoric turns technocratic and securitised and health framed as biosecurity. A third vision is ‘Pluralist Development Cooperation’. There is no single system, but many partially overlapping regimes: Chinese, Indian, Gulf, regional, and club initiatives. Low and middle income countries gain bargaining space by choosing across offers. The trade-off is fragmentation. Rules on debt workouts, safeguards, and transparency diverge, and global public goods struggle for predictable funding. Finally, a fourth vision is ‘Global Solidarity 2.0’. Development cooperation is rebuilt around shared risks such as climate stability, pandemics, antimicrobial resistance, and debt contagion. North and South co-lead a pooled Global Public Goods Facility. Contributions reflect income and carbon profile, and access reflects exposure to cross-border risk. The donor-recipient binary fades, even if frictions persist.

The world is moving away from a single, post-2000 consensus around multilateralism and poverty reduction. What replaces it depends on which coalition wins the argument, and then bakes that argument into institutions and finance. So what are the visions for the global development architecture in 2030 that we see? One is ‘Aid Retrenchment with Nationalist Conditionality’. Assistance is folded into foreign, trade, and interior policy. Grants shrink, multilateral agencies are sidelined, and cooperation becomes bilateral deals tied to migration control, geopolitical alignment, or access to minerals. Rights, gender, and climate justice recede. A second world is ‘Strategic Multilateralism’. The multilateral development banks stay central, but their remit narrows to macro-stability, crisis response, and “risk containment”. Concessional finance is rationed to countries seen as fragile or geostrategic. Aid rhetoric turns technocratic and securitised and health framed as biosecurity. A third vision is ‘Pluralist Development Cooperation’. There is no single system, but many partially overlapping regimes: Chinese, Indian, Gulf, regional, and club initiatives. Low and middle income countries gain bargaining space by choosing across offers. The trade-off is fragmentation. Rules on debt workouts, safeguards, and transparency diverge, and global public goods struggle for predictable funding. Finally, a fourth vision is ‘Global Solidarity 2.0’. Development cooperation is rebuilt around shared risks such as climate stability, pandemics, antimicrobial resistance, and debt contagion. North and South co-lead a pooled Global Public Goods Facility. Contributions reflect income and carbon profile, and access reflects exposure to cross-border risk. The donor-recipient binary fades, even if frictions persist.

Heßler v Commission
Staff Regulations of Officials
EU officials: entitlement to a tax abatement for a child receiving training ends at the latest on the child’s 26th birthday

Heßler kontra Bizottság
Tisztviselõk személyzeti szabályzata
EU officials: entitlement to a tax abatement for a child receiving training ends at the latest on the child’s 26th birthday

Heßler / Commission
Statut des fonctionnaires
Fonctionnaires de l’Union européenne : le droit à un abattement fiscal pour un enfant en formation prend fin au plus tard au 26e anniversaire de l’enfant

Au moins 55 personnes ont été tuées dans cet immense incendie.

Les « safaris humains » attirant de riches « chasseurs » étrangers qui venaient tirer sur des civils dans Sarajevo assiégée étaient connus dès la fin de l'année 1993. Alors que l'enquête ouverte par la justice italienne relance le dossier, les explications d'un ancien agent des renseignements militaires bosniens.

- Articles / Une - Diaporama - En premier, Une - Diaporama, Bosnie-Herzégovine, Osservatorio Balcani e Caucaso, Siège sarajevo, Défense, police et justice

Les « safaris humains » attirant de riches « chasseurs » étrangers qui venaient tirer sur des civils dans Sarajevo assiégée étaient connus dès la fin de l'année 1993. Alors que l'enquête ouverte par la justice italienne relance le dossier, les explications d'un ancien agent des renseignements militaires bosniens.

- Articles / Une - Diaporama - En premier, Une - Diaporama, Bosnie-Herzégovine, Osservatorio Balcani e Caucaso, Siège sarajevo, Défense, police et justice

Thursday 27 November

Source : © European Union, 2025 - EP

Thursday 27 November

Source : © European Union, 2025 - EP

Thursday 27 November

Source : © European Union, 2025 - EP

Thursday 27 November

Source : © European Union, 2025 - EP

Written by Laurence Amand Eeckhout.

Rare diseases, often underdiagnosed and overlooked, affect over 36 million people in the EU and around 300 million worldwide. The EU supports numerous initiatives to improve diagnosis, care, data sharing and research. The European Parliament is advocating for a comprehensive action plan at EU level to address persistent challenges such as fragmented research, lengthy diagnosis times, limited access to innovative treatment, and the overall quality of life for patients.

Background

There is no formal definition of rare disease. In the EU, rare diseases are those that meet a prevalence threshold of no more than 5 affected persons per 10 000 (i.e. 1 in 2 000). Around 36 million people in the EU therefore live with a rare disease (about 8 % of the EU population). Approximately 6 000 to 8 000 rare diseases have been identified, though the exact number fluctuates as new conditions continue to be discovered and classified. According to the European Medicines Agency (EMA), fewer than 1 000 diseases benefit from an even minimal level of scientific knowledge, and despite scientific advances, about 95 % of the known rare diseases still lack approved treatment. Diagnostic odysseys remain long for many patients: the average time for an accurate diagnosis in the EU is between four and five years. Common symptoms can also sometimes mask underlying rare diseases, resulting in misdiagnosis and delayed treatment. Around 80 % of rare diseases have a genetic cause.

Rare diseases significantly affect a person’s quality of life. Additionally, stigma and a lack of public awareness can deepen feelings of isolation and negatively impact the wellbeing of both individuals living with a rare disease and their families.

EU action on rare diseases

Member States are responsible for their own healthcare policies (Article 168 of the Treaty on the Functioning of the EU). However, the EU can play a supporting role and add value to national action. In the pharmaceutical sector, the EU offers incentives to encourage companies to research and develop medicines for rare diseases at EU scale, which otherwise would not be developed (known as orphan drugs or orphan medicinal products). The European Commission grants ‘orphan designation’ following a recommendation from the Committee for Orphan Medicinal Products at the EMA. In 2023, the EU launched the ongoing revision of its pharmaceutical legislation (including revision of the ‘EU Orphan Regulation’), which was followed in March 2025 by a proposed critical medicines act, which would also address the needs of patients with rare diseases. Directive 2011/24/EU currently facilitates cross-border healthcare, including for these patients. The EU supports the codification and inventory of rare diseases through the Orphanet portal, the ORPHAcode classification system and the European Platform on Rare Disease Registration.

Research is essential to better understand the causes and characteristics of rare diseases and develop new diagnostics and therapies; the EU has supported rare disease research through successive framework programmes. Given the limited knowledge available, sharing data at EU level is vital. A European partnership on research on rare diseases was launched in 2024, co-funded by the EU (Horizon Europe) and counting 180 partners from 37 countries: ERDERA will drive research in prevention, diagnosis, and treatment of rare diseases, with an estimated overall budget of €380 million to 2031, of which approximately €150 million will come from the EU.The EU life sciences strategy, adopted by the Commission in July 2025, places a strong emphasis on advancing research and innovation in rare diseases. This strategy is closely linked to the expected EU biotech act, to be proposed in mid-December 2025, which aims to strengthen the EU’s competitiveness in biotechnology, including on rare disease therapies, while enhancing patient outcomes. The EU also contributes to research coordination on rare diseases through the European reference networks, which enable specialists to discuss cases of patients affected (see textbox).

The European reference networks (ERNs) were established in 2017 and are evaluated regularly. As of 2024, the 24 ERNs include more than 1 600 specialised centres located in around 380 hospitals across 27 Member States and Norway. They cover the main clusters of rare disease: bone, skin, craniofacial anomalies and ear-nose-throat or intellectual and other neurodevelopmental disorders, inherited and congenital (digestive and gastrointestinal) anomalies, epilepsies, adult solid and paediatric (haemato-oncology) cancers, genetic tumour risk or malformation syndromes, kidney, uro-recto-genital, neuromuscular, heart, hepatological or haematological, eye, respiratory, neurological, multisystemic vascular and connective tissue and musculoskeletal disease, as well as immunodeficiency-autoinflammatory-autoimmune and paediatric rheumatic disease and hereditary metabolic disorders and transplantation in children.

In March 2024, the Commission launched the three-year JARDIN joint action to integrate ERNs into national health systems, with a total funding of €18.75 million (€15 million from the EU and €3.75 million from the Member States). A few months later, the Commission launched a new IT platform to better support the ERNs (Clinical Patients Management System 2.0). Since 2017, ERNs have conducted more than 4 500 virtual panels on patients suffering from rare diseases. In 2023, the Commission extended funding for the ERNs, via the EU4Health programme, for another four years (2023-2027), at €77.4 million.

Many patient organisations (including EURORDIS, a non-profit alliance of over 1 000 rare-disease patient organisations from 74 countries) have repeatedly called for an EU action plan on rare diseases. In 2024, the Council invited the Commission to adopt a comprehensive EU-level approach to rare diseases, including a European action plan. The European Economic and Social Committee has supported this call. It also adopted an exploratory opinion on AI, big data and rare diseases in September 2025.

Patients’ organisations have expressed concern that the proposed multiannual financial framework (MFF) for 2028-2034 does not envisage a standalone health programme (to succeed EU4Health) and that health priorities, including rare diseases, could be diluted, once integrated into a broader comprehensive competitiveness fund.

European Parliament position

The European Parliament has been a driving force behind more coherent and ambitious health policies, consistently advocating for equal access to diagnosis and treatment, improved data sharing, and the advance of research and innovative medicines. This commitment was reflected in its 2020 resolution calling for an action plan for rare diseases as part of a post-pandemic public health strategy and its 2021 resolution on the EU’s pharmaceutical strategy. Throughout the current legislative term, Parliament has submitted several written questions to the Commission, addressing key issues such as orphan drugs, critical medicines, the development of a European action plan on rare diseases and adequate funding in the next MFF. Most recently, in April 2025, during a plenary debate attended by Olivér Várhelyi, Commissioner for Health and Animal Welfare, Members of Parliament voiced broad cross-party support for the establishment of a comprehensive EU-level action plan on rare diseases.

Parliament’s Committee on Public Health (SANT) is preparing a legislative own-initiative report (INL) on an EU rare disease action plan (rapporteur Nicolás González Casares, Spain, S&D). It will take into consideration the input provided by more than 4 000 respondents to a public consultation launched in February 2025.

Read this ‘at a glance’ note on ‘Rare diseases – strengthening EU action‘ in the Think Tank pages of the European Parliament.

Fragmented markets, regulatory hurdles and slow uptake threaten Europe's ambitions to lead in life sciences by 2030

In today’s edition: Magnus Brunner defends Europe’s hard-edged migration shift as he rewrites the asylum rulebook, MEPs brace for a pre-Christmas immunity vote tied to Qatargate, and Big Oil drags the EU to court over its new carbon-storage mandate

La république séparatiste de Transnistrie, en Moldavie, renouvelle dimanche son Soviet suprême. Un scrutin sans suspens pour une institution essentielle du régime de Tiraspol parrainé par Moscou.

- Articles / Relations régionales, Moldavie, Transnistrie, Courrier des Balkans, Politique, Une - Diaporama, Une - Diaporama - En premier