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Today in Brussels, EURORDIS President @‌avrilbdaly, CEO VirginieBrosF and Public Affairs Director Valentina Bottarelli handed the #ECRD2024 Open Letter, with over 2,000 signatures, to Stella Kyriakides. 🗣️ Read the full statement from the meeting: go.eurordis.org/s2FDEr

An encouraging discussion with Stella Kyriakides on the future of rare disease policymaking over the next five years covering numerous topics relevant to our community including the expansion of newborn screening!

Delighted to announce that IRDiRC's Special Edition shedding light on the potential power of expanding newborn screening programs through next-generation sequencing (NGS) technologies, is now available! Guest edited by myself and David Pearce. Huge thanks to everyone involved!

It was a pleasure to be part of @rarediseasesint's webinar calling for a WHA Resolution on Rare Diseases in 2025. This commitment could boost access to care, drive research, raise awareness, and create smarter, more inclusive healthcare for all people living with a rare disease.

We had the pleasure of meeting with several MEPs during today’s @Europarl_en Plenary Session, to discuss their commitment to our community and our joint priorities at the start of the new mandate. 🤝 MEP András Kulja, Stine Bosse / Christine, Vlad Voiculescu, Vytenis Andriukaitis, @tomislavsokol

How can Europe stay competitive? Harmonised reimbursement for rare disease treatment access. Speaking on the recent Draghi report, VirginieBrosF emphasised the importance of equal access to treatments, regardless of location.

Where there’s a will there’s a way! ✊@HU24EU The time is NOW for a European Action Plan on Rare Diseases and only by coming together can create lasting change for the 30 million people living with a rare disease in Europe. VirginieBrosF

Speaking this morning on the importance of rare disease policy planning, our CEO VirginieBrosF laid out the three key components needed to take the EU Action Plan from an idea to reality.

At POLITICOEurope Health Summit, VirginieBrosF met with Stella Kyriakides who called for the continued building of a robust European Health Union that supports all EU citizens, including those with rare diseases, and making sure the health budget remains strong in the next cycle.

🗣️ "When we care, and when we show that we care, we will achieve far more than we ever thought possible." - VirginieBrosF Explore how we will be continuing to advance diagnosis, treatment access, and rare disease care in the year to come. 📖 go.eurordis.org/iSX2Vp