🚨 Somewhere out there are the next stars of the rare disease community and we need your help in finding them! 🚨 Don’t miss your chance to nominate yourself or someone who has made a difference for your community 👉 go.eurordis.org/Nominate

The deadline for the Rare Barometer survey is in less than 2 weeks! You can still make your voice heard! Share your experiences living with a rare disease and help us understand the challenges you face. Click the link to take the survey today!🗣️tiny.cc/RB_DailyLife

3 days to put in your nominations for the EURORDIS-Rare Diseases Europe #BlackPearlAwards 👇

In Part 2 of our conversation with Paralympian & Researcher Sofie Skoubo, Sofie reveals how her PhD is pushing the boundaries of classroom accessibility so that children with rare diseases stay connected to their education and vital social interactions! ▶️go.eurordis.org/10MW

🌎 RDI is advocating for a WHA Resolution on Rare Diseases in 2025. This could boost access to care, drive research, raise awareness, and create smarter, more inclusive healthcare. Let's drive lasting change together! Register today: tinyurl.com/2mmz7fpz

As #Paris2024 has demonstrated, sport goes beyond physical activity; it fosters a sense of belonging and unity. If you have faced barriers to accessing social activities due to your rare condition, share your experience in the #RareBarometer survey: tiny.cc/RB_DailyLife

We’re one day away from RDI webinar on the proposed Resolution for #RareDiseases at the 2025 World Health Assembly. This resolution could transform care, research & awareness for 300m people with rare diseases. Don’t miss out, register now: tinyurl.com/2mmz7fpz

In the final instalment of our alumni interview series, Ana Pataki, President of the Serbian PKU patient organisation, BRoMoLoGoS, shares how the schools empowered her to increase collaboration between her organisation and researchers. 👉 go.eurordis.org/71R0tn

Forgotten to submit your #EURORDISAwards2025 nominations? Today is your lucky day! 😏 The deadline has been extended to 12 September, 2024! Don’t miss the chance to put someone worthy forward for the recognition they deserve! 👉 go.eurordis.org/Nominate

In this new article, Maria Cavaller Bellaubi and Ariane Weinman analyse parent's and children's perspectives on how the future of paediatric drug development could be improved for the maximum benefit of the paediatric population. Read the full chapter: bit.ly/ETPDD_ch3

It’s Newborn Screening Awareness Month! 👶 #NBS We’ll be highlighting the importance of NBS with insights from our 2024 #RareBarometer survey. Stay tuned! Learn about our efforts to advocate for expanded, harmonised NBS across Europe: go.eurordis.org/NBS

Hurry! ⏰ There is less than one week left to respond to the #RareBarometer survey on the impact of living with a rare disease on daily life. Don’t miss this chance to make your voice heard! 🗣️tiny.cc/RB_DailyLife

Get ready for the implementation of the new EU Regulation on Health Technology Assessment (HTA) next January by joining us online for the EUCAPA Fast-Track and Extended Training Programmes! Learn more 👉 eucapa.eu/trainings

We are thrilled that our INNOVCare case study, submitted at the invitation of European Commission, is now available on the Social Innovation Match database, promoting successful social initiatives and future partnerships. #ESFplus #SocialInnovationPlus 👉 go.eurordis.org/JLOy8j

Learn more about @rarediseaseint’s campaign for a World Health Assembly Resolution on Rare Diseases and why it is vital for the global rare disease community: 👉rarediseasesinternational.org/wha-resolution/

Coinciding with #NewbornScreening Awareness Month, Gulcin Gumus, co-authored a paper on the critical need for timely newborn screening to improve life quality for the rare disease community, now published in Rare Disease and Orphan Drugs Journal. 📚 Read now: go.eurordis.org/MhwykP

Timely and accurate diagnosis is crucial for people living with a rare disease. ⏱️ Learn more about the importance of diagnosis, life ‘not yet diagnosed’ vs ‘undiagnosed’, and the actions we are taking to enhance access to early & reliable diagnosis: 🤝 go.eurordis.org/diagnosis

Time is running out! ⏰ This is your last chance to recognise and celebrate the individuals, organisations, and initiatives making a profound impact in the rare disease community! #EURORDISAwards2025 🚨 Deadline: 12 September, 2024 🏆 Nominate now: go.eurordis.org/Nominate