We would like to thank Chiesi Group for their support of #ECRD2024 and their continued efforts in striving to co-create a brighter future for the rare disease community. 🤝 Chiesi Global Rare Diseases

See the full list and secure your space to join us! 👉 go.eurordis.org/hVPVPA

Read more about the possibilities inherent in expanding newborn screening programmes, the latest Rare Barometer survey, and what to expect from ECRD 2024, with insight from one of the event’s top donors, Takeda.

👉 go.eurordis.org/jgDmqN

We would like to take this opportunity to recognise the contributions of our #ECRD2024 media partners!

See the full list and secure your space to join us! 👉 go.eurordis.org/hVPVPA

This is your last chance to benefit from the Europe Day Flash Sale and get a 15% discount on your #ECRD2024 tickets by using the code ECRD2024_EUROPE15 at checkout! 🇪🇺

Secure your tickets by 4:00pm CEST, TODAY 👉 go.eurordis.org/hVPVPA

Discover the role of health data in rare disease research with EJP RD - European Joint Programme on Rare Diseases's online course!

Co-designed and taught by our Research Policy and Initiatives Director, Roseline Favresse, the programme is open to anyone wanting to learn more!

🎓 go.eurordis.org/szB6WI

In recognition of Europe Day (9 May), for the next 48 hours you can get 15% discount off your #ECRD2024 tickets by using the code ECRD2024_EUROPE15 🥳🇪🇺

Secure your space now! ➡️ go.eurordis.org/hVPVPA

Offer must end 4:00pm CEST, Friday 10 May

Over 5,000 participants made their voices heard across Europe!

The #RareBarometer survey on the opinion of people living with a rare disease revealed that 70% of participants would have liked their condition to have been diagnosed at birth.

🔗 go.eurordis.org/BCvcLA

Positively styling life with Lymphoedema 💁

Tune in to the brand new episode of #EurordisRareOnAir in which host Julien Poulain speaks with Nicole Faccio, an inspiring social media advocate and winner of the 2023 EURORDIS Social Media Award. ✨

🎧 go.eurordis.org/Jeh4A0

Former Italian Prime Minister Enrico Letta recently released a report entitled ‘Much More Than a Market‘, as requested by the European Council in June 2023.

Learn more about what this could mean for people living with rare diseases:

🗞️ go.eurordis.org/JVA9pE

New webinar alert! 🚨

On 28 May, Gergely Meszaros and Francesco Bonella will present the GoEast! Project, a patient-led initiative to raise awareness about ERNs among health professionals in Eastern European countries.

➡️ Register now! 👉 go.eurordis.org/p8lNPq

Bringing a renewed focus 💪

In our 6th and last #ECRD2024 parallel session, participants will be delving into case studies of good practices in designing, monitoring and implementing healthcare measures!

Don’t want to miss out! ➡️go.eurordis.org/hVPVPA

Do you want to be a part of Rare Disease Week 2024? 🙋 Now is your chance!

Learn how to advocate at EU level, helping to ensure that rare diseases remain a priority next term!

🗓️ 18-20 November, 202
📍 Brussels, Belgium
🚨 Deadline: 10 May

Apply now! go.eurordis.org/fxoYrh

Charting the Future 🗺️

With the EU elections fast approaching, we caught up with the EURORDIS Public Affairs Director, Valentina Bottarelli, to discuss the urgent need for an EU Action Plan for Rare Diseases. ⬇️ #ActRare2024

Read the full interview: go.eurordis.org/jpOql6

📣 Calling all members of the osteogenesis imperfecta (OI) and rare bone disease communities!

In collaboration with EURORDIS, REMEDi4ALL is hosting a meeting dedicated to amplifying the voice of patients in OI research.

🔗 Make your voice heard! go.eurordis.org/TuN0qG

Join the third and final #ECRD2024 Thought Leader Session!

💬 The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease
👀Featuring the exclusive release of the Commission's new global framework!

🗓️ 7 May 2024
⏰ 2:00pm CEST
👉 go.eurordis.org/jDRAD2

Avril Daly, president and Virginie Bros-Facer, CEO at EURORDIS-Rare Diseases Europe discuss how we find ourselves at a pivotal juncture in the fight against rare diseases. With numerous elections in the offing, we stand before an opportunity to shape the future. bit.ly/WomenInRARE-Eu… #WomenInRARE

Of the 350 million people living with a rare disease, over 50% are undiagnosed.

Register for #ECRD2024 to be the first to hear about the results of the latest Rare Barometer survey on the diagnostic odyssey of people living with a rare disease! ➡️ go.eurordis.org/hVPVPA

Enrol in the new #EURORDISOpenAcademy online course, 'Introduction to Genetics and Genomics”, in one simple click!

Dive into inheritance patterns, DNA structures, genetic testing and much, much more! 🔽

go.eurordis.org/OZjXg5