It takes two to tango! 💃

Patient-clinician partnership in the ERNs can consist of a variety of things: setting goals, meeting to discuss concerns, evaluating progress and celebrating achievements!

Are you involved in an ERN? 🙋 Find out more: go.eurordis.org/rWNgdL

The rare dise­ase comm­unity still has vast unm­et needs, and access to treatm­ents and thera­pies was ident­i­fied by the community as the top prio­ri­ty to be addressed by 2030. 💊

Europe must commit to tackling this inequality and #ActRare2024 !

We sat down with EURORDIS President, Avril Daly 💚, and our new Chief Executive, Virginie Bros-Facer, to catch up on how the leadership transition has been for them.

Virginie shares her immediate priorities and her message for our member organisations!

📖 go.eurordis.org/V8xnCc

Step through a portal to another world! 🌀

What magic can you expect from #ECRD2024 ? Find out directly from the event’s lead coordinator, our Open Academy & Events Director, Sharon Ashton!

Read the full article: go.eurordis.org/U1OKT2

The GasteinForum is offering scholarships to enable young health professionals from the WHO European Region to participate in their Youth Forum programme! #YFG2024

The call for applications closes 13 May 2024, 23:59 CEST. Learn more ⬇️

Join HAE International (HAEi) in the #Active4HAE campaign to promote HAE awareness!
This is a global challenge in which participants collect points for doing sports and leisure activities.

The campaign is running in tribute to International HAE Day, which falls on 16 May!

Spark your curiosity and deepen your understanding with the #ECRD2024 Thought Leader Sessions!

💬 Harnessing Digital Solutions for Rare Diseases - Jelena Malinina
🗓️ 25 April
⏰ 12:00pm CET
👉 go.eurordis.org/jDRAD2
Free to all - conference registrants not automatically registered.

It's #EuropeanPatientRightsDay !

Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.

👉 Learn more about our eight key asks to future European policymakers!

Do you want to learn more about Health Technology Assessment (HTA)? 🙋

EUCAPA offers three training programmes designed to enable people living with rare diseases and their representatives to fully participate in HTAs!

➡️ Learn more: eucapa.eu

Read more from our Women in RARE at bit.ly/WomenInRARE

Mental health matters! 🧠

At #ECRD2024 , we will be co-creating a new toolkit for the rare disease community by exploring best practices and tools that can be drawn on and scaled to form the basis of the new Toolkit.

Less than one month to go!
Join us 👉 go.eurordis.org/hVPVPA

.Virginie Hivert 'Patients are experts in their own diseases.
There are no excuses not to involve them.
📃Methodologies to engage patients have been established since the 80s, still evolving.
🤝Stakeholders are collectively responsible to listen and collaborate with patients.'

We are happy that our CEO Virginie Bros-Facer could join today's #CellAndGeneTherapy Summit!
She stressed the importance of multistakeholder engagement and developing robust clinical trials that incorporate patient input to reach endpoints that reflect patient priorities.

Women in Rare 👏

Catch our CEO Virginie Bros-Facer and President Avril Daly 💚 in the latest edition of RARE Revolution Magazine breaking down why this is a pivotal moment for our community and what we are doing about it!✊

Page 81 ➡️ bit.ly/WomenInRARE-Eu…

🚨 Stop scrolling! 🚨
The 'Speak up. Listen up. Follow up' e-toolkit is here! Introduce yourself to this resource hub for survey design and unleash the power of data to drive research and improve health outcomes for your community!

➡️ go.eurordis.org/c0TJrb

Join next week’s Rare Disease Forum 2024, co-organised by EURORDIS, featuring ‌Yann Le Cam, for discussion on the EU's role in enhancing competitiveness in life sciences, fostering investment, and the benefits of a competitive agenda.

Register now ➡️ events.global-counsel.com/RareDiseasesFo…