Top Tweets for #RareEU
It’s time for the Commission to set up a European Action Plan on Rare Diseases. This #RareDiseaseDay, I call on @vonderleyen to introduce a comprehensive strategy that would better meet the needs of the 30 million EU citizens living with a rare disease.
#RareEU
@eurordis
Today we mark #RareDiseaseDay2023!
All over the world millions of people raise awareness to ensure access to diagnosis, treatment and care. We advocate for 300M people with rare diseases worldwide and 30M people across Europe.
#30millionreasons #RareEU #rarediseaseday
#RareDiseaseDay focuses on achieving equity for the 30 million people living with a rare disease in Europe. With 14 years since the last EU Strategy, it is time for the EU Commission to introduce a European Action Plan on Rare Diseases. #RareEU
@vonderleyen @eurordis
On #RareDiseaseDay I'm joining the call on @vonderleyen to introduce a comprehensive European strategy on rare diseases to better meet the needs of the 30 million European citizens living with a rare disease.
#RareEU
Este #RareDiseaseDay, pedimos a @vonderleyen que impulse una estrategia europea https://t.co/sO6oqbsV2p para mejorar la atención que reciben los 30 millones de pacientes que sufren una enfermedad rara en la UE. #RareEU
Today is #RareDiseaseDay. I have co-signed a letter to @ursulavonderleyen calling for a European Strategy on rare diseases to better meet the needs of the 30 million European citizens living with a rare disease. #RareEU
@eurordis
Throwback to Brussels Rare Disease Week! #RareEU
Earlier this month, 38 rare disease advocates convened in Brussels for a week of training and advocacy. They focused on five main policy asks, but the overarching theme was the call for a new European Action Plan on rare diseases.
And just like that, Brussels #RareDiseaseWeek 2023 is done! 🇪🇺
Massive congratulations to all our participants for the unfailing dedication to their community and the enthusiasm which they have shown throughout the week! #RareEU
Our @Europarl_EN event bought together policymakers and patients to discuss the future of the Orphan Medicinal Products Regulation from a variety of standpoints.
Learn more about what was discussed and how this could impact you:
📃 https://t.co/myK1gH8i6m
#RareEU
Wrap up session of #RareDiseaseWeek thanks to @eurordis for a powerful 4 day programme at the EU. Impressive advocacy by patients at EU level. We met approx 30 MEPs #RareEU @sallsynt @jessicapolfjard
#SolveRD Reanalysis of unsolved exomes and genomes Solving the unsolved #rarediseases 10% additional accuracy attained. @HeleneLBorgne @eurordis #RareEU #RareDiseaseWeek #CoffinLowry @sallsynt
Precis träffat MEP @jessicapolfjard s Assistant Jesper Daniel Carlsson. Har berättat om våra uppmaningar och behov för en bättre och samordnad vård. Bra möte. #RareDiseaseWeek #RareEU #HHT @sallsynt @eurordis @vascern #patient #advocacy
Cheering on the dialogue in #Brussels between #raredisease patients in the EU and their elected officials. #Advocacy can change and save lives. @eurordis #RareEU
Today #RareDiseaseWeek participants met with yet more MEPs and participated in our conference @Europarl_EN on upcoming revisions to the legislation aimed at incentivising the development of rare disease medicines.
Stay tuned for our summary!
👀 https://t.co/xjhNE0hpbu
#RareEU
Today #RareDiseaseWeek participants met with yet more MEPs and participated in our conference @Europarl_EN on upcoming revisions to the legislation aimed at incentivising the development of rare disease medicines.
Stay tuned for our summary!
👀 https://t.co/xjhNE0hpbu
#RareEU
Thank you for your time and for receiving @eurordis @FEDER_ONG @FundacionDravet today at the European Parliament to discuss how the European Pharmaceutical Strategy can address rare diseases patients needs! Gràcies @DolorsMM #rareeu #30millionreasons #rarediseases
En la Eurocámara logramos que las enfermedades raras sean una prioridad dentro de la Estrategia Farmacéutica Europea.
Me reúno con asociaciones de pacientes y comparto sus reclamaciones: más investigación, mayor acceso a tratamientos y mejorar la calidad de vida de los pacientes
Thanks very much for meeting with us yesterday Billy, it was an opportunity to share from our experiences the challenges the #rarecommunity face but also how the 🇪🇺 could enable #meaningfulchange through a European Action Plan for Rare Diseases #RareEU @eurordis @rareireland
It’s #RareDiseaseWeek and I was delighted to meet with amazing 🇮🇪 patient advocates from @eurordis this week in Brussels.
Managing rare diseases requires a pan-EU approach. A #EuropeanHealthUnion will be an important part of supporting patients and their families.
Opening today's @Europarl_EN event on the revision of the Orphan Medicinal Products Regulation, @Frederiqueries reaffirmed that this legislation represents an important opportunity for the future of our community. #RareEU
Currently in the @Europarl_EN there is a discussion about the revision of the Orphan Medicinal Products Regulation, a very important topic for the #rarediseas community. The event is organised organised by @Frederiqueries in cooperation with @eurordis.
#RareEU #RareDiseaseWeek
At the European Parliament advocating for improved legislation to support #RareDisease community #RareEU #HHT @sallsynt @eurordis @HhtSverige
🔎This is how our Foundation's participation in #RareDiseaseWeek is going along with the Spanish delegation. Yesterday we talked with MEPs about an action plan and how critical time is for patients and politicians. 👏👏
#RareEU #RareDiseaseDay
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