Public Affairs Director & Head of European and International Advocacy at EURORDIS-Rare Diseases Europe
Brussels
Joined November 2012
- Tweets774
- Following272
- Followers801
- Likes1.4K
Valentina Bottarelli retweeted
And the day has arrived! It is now officially 100 days until #RareDiseaseDay!
A heartfelt thank you to our 70+ national alliances who lead the campaign in their countries. We are so excited to see how you will be making Rare Disease Day 2025 a special and memorable one!
Valentina Bottarelli retweeted
It’s here! The #RareBarometer survey on the impact of rare diseases on daily life is officially live.
Make your voice heard by answering this survey, available in 25 languages!
🌍 tiny.cc/RB_DailyLife
ALT "What would it take for you to be able to live your life to its fullest?". Features a photo of a young child standing in a tower of colourful plastic tires.
Valentina Bottarelli retweeted
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: go.eurordis.org/sign
ALT "Sign our Open Letter!" Features a photo of EURORDIS President, Avril Daly, signing the letter at ECRD 2024.
"This Joint Action is more than a Joint Action for people living with #RareDiseases. It is a life time opportunity to have equal access to evidence based care" @inesernando @jardin_EU_JA
Our own @inesernando welcomed the ambition and the comprehensiveness of @jardin_EU_JA and thanked everyone involved for being bold in their support of the networks. 🚀
ALT Quote from Ines Hernando, EURORDIS ERN and Healthcare Director: “Their raison d’etre is to improve health outcomes of people living with a rare disease or complex condition but they can't do that if they are not connected.”
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Valentina Bottarelli retweeted
It’s #InternationWomensDay! ✊
Today, we honour the countless women who dedicate their time, energy, and expertise to making a difference in the lives of those impacted by rare diseases. 🫂 #IWD2024
Valentina Bottarelli retweeted
🌍 MEP @Konecna_K's support for #ActRare2024 once again underscores their dedication to rare diseases and equality in Europe.
Thank you, Kateřina, for being a voice for the rare disease community! #RareDiseaseDay #EU
Den 29. 2. je nejvzácnějším dnem v roce. Proto si právě v něm připomínáme Den vzácných onemocnění. Na světě žije 300 milionů lidí se vzácným onemocněním, 30 milionů v Evropě, z toho 20 milionů v EU. Aby se zlepšil život občanů EU se vzácnými onemocněními musíme přijmout účinné přeshraniční a celoevropské strategie boje s nimi. Proto dlouhodobě podporuji jak novorozenecké screeningy na vzácná onemocnění, tak hromadné nákupy léků na vzácná onemocnění na úrovni celé EU. Jenom tak se nám podaří dostat superdrahé léky k pacientům, kteří je potřebují, a nezruinujeme náš zdravotnický systém. #actrare2024
@eurordis
It is #RareDiseaseDay today at the #EuropeanParliament too! Start the day by joining the debate live – at Elsene, België
Tune in TODAY at 9AM for #RareDiseaseDay! 🕒
Join @Europarl_EN live exchange with our CEO @yann_eurordis & @dani_drachmann of KHI. Let's amplify their voices for the 30M in Europe!
🇪🇺 Support #ActRare2024 NOW! #RareDiseases
europarl.europa.eu/committee…
Valentina Bottarelli retweeted
The #EURORDISAwards2024 begin by paying tribute and saying thanks to @yann_eurordis, who is attending his last Black Pearl Awards as our Chief Executive Officer!
Yann Le Cam steps down as our Chief Executive Officer next month.
Thank you for everything, Yann.💓💫
ALT Yann Le Cam, Chief Executive Officer of EURORDIS, speaking at the EURORDIS Black Pearl Awards.
Sad day indeed for the public health community and for the people living with #rarediseases.
We were saddened to recieve the news of the passing of John Ryan, former Deputy Director General for Health @EU_Health.
John was one of our community’s major champions, and we will be eternally grateful for his unwaivering support. Our condolences go to his family and friends.
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Valentina Bottarelli retweeted
🌟 Happy New Year🌟
As we embark on a new year, we would like to extend our heartfelt gratitude to each member, supporter, and partner for their continued commitment to the rare disease community.
We look forward to another year of shared efforts and achievements!
ALT EURORDIS staff in a group photo with a border of snow.
Valentina Bottarelli retweeted
Decision makers at national level and the entire rare disease community are ready to work together to deliver a European Action Plan for #RareDiseases! 🇪🇺
@EU_Commission
Valentina Bottarelli retweeted
We’re in Bilbao, at the @EESC_PRESS Conference on #RareDiseases, to shed light on the challenges facing our community and to find solutions!
Join online: eesc.europa.eu/en/agenda/our…
Great networking session on “national actions with an impact” @ #EMM2023 @eurordis led by @Lene_Jensen_DK. A take home message? Success is the “crucial role of patient organisations” in the Danish National Strategy on #RareDiseases measures enshrined in the evaluation report
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Today is #RareDiseaseDay2023 ! Are you ready to #LightUpForRare ? @7pm CET @eurordis – at Chamois, Valle d'Aosta
Valentina Bottarelli retweeted
Time for Africa and Europe to mark #RareDiseaseDay 2023!
TV broadcasts, radio podcasts, public transport visuals… Through various means, the community is sharing our call for equity everywhere! Are you also ready to share your colours 💙💚💜?
👉 rarediseaseday.org/category/…
Great first full day of #RareDiseaseWeek, with old and new friends at Spanish PermRep, European Commission and MEPs.
I cannot wait to join the EP meeting! Watch live @2pm-4pm CET: cutt.ly/f9VGDlc #RareEU
Today, participants of Brussels #RareDiseaseWeek met with members of the Spanish Permanent Representation to the EU and their MEPs to discuss how we can continue driving forward the momentum for comprehensive improvements in rare disease policy.
#RareEU #30millionreasons
ALT Participants meet with Enrique Terol, Health Attaché to the Spanish Permanent Representation to the EU. The photo shows EURORDIS Public Affairs Director & Head of European and International Advocacy, Valentina Bottarelli, talking to the group from behind a lectern. The photo is surrounded by our Brussels Rare Disease Week frame.
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Valentina Bottarelli retweeted
The revision of the Orphan Medicinal Products Regulation is an unprecedented opportunity for our community!
Join this @Europarl_EN event, hosted by @Frederiqueries in collaboration with us, to be part of the conversation!
Register now: cutt.ly/f9VGDlc
ALT Photo of a European Parliament Building on a bright, clear, winter day. Surrounded by Brussels Rare Disease Week frame featuring the EURORDIS logo.
Valentina Bottarelli retweeted
Today, @vlvalek 🇨🇿Health Minister will bring forward the Call to Action on #rarediseases at @EUCouncil (EPSCO).
Read our exclusive interview to hear his thoughts on why we need a European Action Plan & the efforts he is making to bring it to fruition.
👀 cutt.ly/g10XuPa
ALT Vlastimil Válek speaking at the Expert Conference on Rare Diseases, Prague, 25-26 October 2022.