toon digneffe

🇪🇺 🇧🇪

[EURORDIS-Rare Diseases Europe @eurordis]

What comes next for rare disease policy in Europe?

Today, ahead of #ECRD2026, the rare disease community came together in Prague to advance the European Blueprint for Rare Diseases and help define the priority actions needed by and for over 30 million Europeans.

[toon digneffe @DigneffeToon]

⁦@orphan_drugs⁩ ⁦@EU_Commission⁩ ⁦@eurordis⁩ ⁦@RosaCastroB⁩ https://t.co/ZSEVGcHb13

[EU One Health @EU_Health]

📢 We have just launched a public consultation for the Biotech Act! 

We want to hear from the Biotech sector to better understand your challenges and barriers to turning ideas into impact that could be addressed at EU-level.

📅 Deadline: 10/11/2025

🔗 https://t.co/uoaNiDULac

[EURORDIS-Rare Diseases Europe @eurordis]

In @Parlimag's @eu2025dk Guide, our CEO @VirginieBrosF explores the ways in which this Presidency presents a crucial opportunity for our community.
🗣️“The ambition is here. The frameworks are emerging. What we need now is political will and commitment.”
👉 https://t.co/yQyRdMSLug

[EURORDIS-Rare Diseases Europe @eurordis]

🏆 The EURORDIS Leadership Award 2025 goes to Dr Violeta Stoyanova-Beninska!

A visionary in rare disease policy & regulation, her leadership at EMA COMP has shaped patient-centred treatments & policies worldwide. 🌍💜

#EURORDISAwards2025

[toon digneffe @DigneffeToon]

@eurordis @SKyriakidesEU Congrats @SKyriakidesEU - what a lovely night. I enjoyed our conversation

[toon digneffe @DigneffeToon]

@DrTedros @COP29_AZ Elevating health and climate

[Tedros Adhanom Ghebreyesus @DrTedros]

Thank you @COP29_AZ Presidency for establishing the Baku COP Presidencies Continuity Coalition on Climate and Health.

This initiative unites the visionary leadership of five COP presidencies that span this critical time for action, underscoring a commitment to elevate health within the climate agenda.

This coalition represents a collective will to prioritize climate and health now and for the future.

I also welcome #Azerbaijan to the @WHO's ATACH initiative! #COP29

[toon digneffe @DigneffeToon]

@PPTAEurope @LivePOLITICO @POLITICOEurope @TakedaPharma #EUNeedsMorePlasma

[toon digneffe @DigneffeToon]

‘The economic lens: understanding what makes Europe attractive for life science investments’ ⁦@EUCOPE⁩ ⁦@FTIConsulting⁩ https://t.co/PY7hWHqSWD

[World Orphan Drug Congress @orphan_drugs]

🌍 Highlighting Our Patient-Focused Partners at #WODC 2024!

We’re thrilled to have the support of these incredible organisations exhibiting this year. These partners are dedicated to driving patient advocacy and improving the lives of those affected by rare diseases.

[European Commission @EU_Commission]

Sport unites in diversity – and so does our Union.

The #Paris2024 Olympic Games kick off tonight, followed by the Paralympics, for a summer of sport until Sept 8.

It’s more than competition, it’s about inclusion and solidarity. The same values of 🇪🇺.

Best of luck EU countries!

[Stella Kyriakides @SKyriakidesEU]

Productive meeting with @eurordis.

I thanked them for their cooperation and strong support to build an 🇪🇺 #HealthUnion over the last few years with key legislstive initiatives.

We will continue working closely in the next months to support patients living with rare diseases.

[toon digneffe @DigneffeToon]

On the occasion of World Environment Day and ahead of the EU elections, I’m sharing my reflections on environmental sustainability in below article https://t.co/a41Rcn8JVb

[Leire Solis @LeireSolis]

Looking forward to participating in this UNITAR breakfast roundtable discussion on how people with #primaryimmunodeficiencies can have access to live-saving therapies such as #immunoglobulins.
#HealthForAll #WHA77

[EURORDIS-Rare Diseases Europe @eurordis]

Have you signed yet? 🖋️

Over 600 people have already signed the #ECRD2024 Open Letter to the future leaders of Europe.

🔗 Sign now on behalf of yourself or your organisation: https://t.co/6Xjf4LRX4c

[toon digneffe @DigneffeToon]

@EU_Commission @EUPublications #UseYourVote

[European Commission @EU_Commission]

The #EUelections2024 take place on 6-9 June.

To protect your choices, be critical of what you read online.

Protect yourself against manipulation.

[Belgium in the USA @BelgiumintheUSA]

🇪🇺 Today is #EuropeDay! This year is even more important as Belgium is holding the Presidency of the Council of the EU @EU2024BE! We stand for unity and shared sovereignty in Europe. European cooperation is the only way forward to tackle major challenges we are facing. #EU2024BE

[Screen4Care @Screen4Care]

🗣️ We provided 6,000+ people living with a rare disease the opportunity to voice their opinions on 🧬#NewbornScreening, and the results of the Rare Barometer survey are now available!

Explore the insightful and highly motivating findings
🔎https://t.co/D4AOvJPpOO

#Screen4Care