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As Rare Disease Day 2025 comes to a close, its impact continues to resonate across Europe and beyond. Held annually on the last day of February, this year’s event drew critical attention to the 30 million people in Europe living with a rare disease, underscoring the urgent need for faster diagnoses, increased research, improved treatments, and stronger policies. Among the initiatives making strides in this space is ERDERA, the European Rare Disease Research Alliance. Having launched in late 2024, ERDERA took part in Rare Disease Day for the first time this year. While the event often shapes awareness efforts and READ MORE

On 28 February, coinciding with the 2025 Rare Disease Day, Parliament’s public health committee, SANT, launched an online survey to gather insights on rare diseases. The initiative aims to build a detailed understanding of the challenges faced by individuals affected by rare diseases, as well as to collect views from stakeholders—including patients, caregivers, industry representatives, and NGOs—to inform future policy and legislative reforms. The consultation, open for one month, invites all interested parties to provide anonymous input on their difficulties, needs, and expectations regarding further EU actions in the field. This survey follows previous Parliament resolutions that underscored the importance READ MORE