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miércoles, 1 de abril de 2026

EURORDIS welcomes European Parliament draft report calling for a European Action Plan on Rare Diseases March 2026

https://www.eurordis.org/response-draft-proposal-for-action-plan/ EURORDIS welcomes European Parliament draft report calling for a European Action Plan on Rare Diseases March 2026 5 March 2026, Brussels – EURORDIS–Rare Diseases Europe welcomes the draft report presented by MEP Nicolás González Casares, Member of the European Parliament Committee on Public Health (SANT), calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework.

DRAFT REPORT with recommendations to the Commission on a European Union rare disease action plan (2025/2130(INL)) Committee on Public Health Rapporteur: Nicolás González Casares

https://www.europarl.europa.eu/doceo/document/SANT-PR-785192_EN.html On 2 March, MEP Nicolás González Casares presented a draft own-initiative legislative report to the European Parliament’s Public Health (SANT) Committee, calling on the European Commission to propose legislation establishing a European framework for rare diseases. The report highlights that, among the 6,000 to 8,000 identified rare diseases affecting an estimated 27 to 36 million people in the EU, around 95% still lack an authorised treatment. The report calls for a comprehensive approach addressing the full rare disease pathway, including improved coordination of research, faster and more equitable diagnosis, better access to therapies, strengthened support for patients and families, and enhanced data sharing, notably through the European Health Data Space. It also emphasises the need to reduce inequalities across Member States and reinforce the role of the European Reference Networks. EURORDIS welcomed the report as an important step forward in the long-standing effort to establish an EU Action Plan for Rare Diseases. “We are very happy with this draft report, which reflects a growing recognition in Europe that rare diseases cannot be addressed through fragmented national policies alone. The scale of the challenge demands a coordinated European approach,” said Valentina Bottarelli, Head of Policy & Public Affairs at EURORDIS. MEPs on the SANT Committee had until 26 March to submit amendments to the draft report. A vote in Committee is expected in June, followed by a plenary vote in the European Parliament, likely in September.

Olivér Várhelyi presents Biotech Act I to parliamentary committee

https://control.eup.glcloud.eu/content-manager/content-page/20260319-1100-COMMITTEE-SANT?audio=fr&lang=fr&logo=true&multicast=true On 19 March, during a joint meeting of the SANT and ITRE committees, Commissioner for Health and Animal Welfare, Olivér Várhelyi, presented part one of the Biotech Act, followed by an exchange with Members. Published in December 2025, Biotech Act I aims to strengthen Europe’s biotechnology and biomanufacturing sectors by supporting innovation, simplifying regulatory frameworks and boosting investment. The discussion highlighted growing concerns about Europe’s declining competitiveness in biotechnology, particularly in clinical trial activity. The EU’s global share has fallen from 18% to 9%, while China’s has risen to around 30%. The proposed Act seeks to address these challenges by accelerating clinical trial approvals, especially for multi-country trials, streamlining regulatory procedures, and promoting the use of health data and artificial intelligence. It also aims to close the investment gap, with the European Investment Bank expected to mobilise up to €10 billion to support biotech scale-ups. MEPs also stressed the decline in the share of orphan medicines developed by EU-based companies, reinforcing calls to strengthen Europe’s capacity to deliver innovative treatments more rapidly and equitably across Member States. The next steps include committee reports (by both SANT and ITRE), that will shape the Parliament’s position, while the Council carries out its own parallel examination. https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/14627-Biotech-Act_en

Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis March 2026

Ending the diagnostic odyssey: How Europe can lead the way in rare disease diagnosis March 2026 For many people living with rare diseases, the hardest part of their illness isn’t the treatment. It’s the wait for a diagnosis. Symptoms appear. Appointments follow. Tests are run. Specialists are consulted. And still, for what can be years, there are no answers. https://www.eurordis.org/how-europe-can-lead-way-rare-disease-diagnosis/

“Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases” 3 & 4 June 2026 in Prague  and online

https://www.rare-diseases.eu/

EURORDIS supports EU Member States’ efforts to secure reintroduction of health NGOs’ operating grants March 2026

EURORDIS supports EU Member States’ efforts to secure reintroduction of health NGOs’ operating grants March 2026 4 March 2026, Brussels – EURORDIS–Rare Diseases Europe, together with fellow members of the EU4Health Civil Society Alliance, reiterates its call for the European Commission to reinstate operating grants for health non-governmental organisations, as political momentum grows among EU Member States for their return from 2026 onwards. https://www.eurordis.org/eurordis-supports-member-states-efforts-operating-grants-reintroduction/