Rare Disease Policy

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Rare Disease Policy

Rare Disease Policy

@RareDiseasesEU

@RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own

Newcastle, UK Katılım Mayıs 2013
895 Takip Edilen3.4K Takipçiler
Rare Disease Policy
Rare Disease Policy@RareDiseasesEU·
Happy to be participating to the 2nd Summit on the European EHR Exchange Format or EEHRxF today in Brussels! This organised by one of my projects, @xpandh_project , together with @EU_Commission. I'm interested in how our European #raredisease community can benefit from #EHDS
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Rare Disease Policy
Rare Disease Policy@RareDiseasesEU·
Very happy to have joined this important meeting under the @EU_EESC on Friday rb.gy/onxxzn An important step on the road to a EU Action Plan for Rare Disease / new EU policies!
EURORDIS-Rare Diseases Europe@eurordis

Victoria Hedley, Rare Disease Policy Manager @UniofNewcastle, highlighted the importance of member states having national plans to facilitate the achievement of the SMART goals Mr Terol called for. 🗣️ “The rest of the world look at the EU for national plans.”

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NCL_RareDisease
NCL_RareDisease@NCL_RareDisease·
Our #Newcastle Centre for #RareDisease is working towards a better future for people living with rare conditions, in which, just as #RareDiseases aren't actually all that rare, treatments aren't either #RareDiseaseDay2024 @RareDiseasesEU
Newcastle University@UniofNewcastle

Did you know rare diseases aren't that rare? With around one in 17 of us directly affected by a disease @NCL_RareDisease are working with @NHIPartners and @NewcastleHosps to make sure treatments aren't rare either. #WeAreNCL #RareDiseaseDay @RareDiseasesEU

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Rare Disease Policy
Rare Disease Policy@RareDiseasesEU·
Follow today's #JARDIN conference online! This is a v. important new Joint Action for #ERNs ! tinyurl.com/yydbne27 - After YEARS of recommending e.g. in #Rare2030 'we need to integrate and embed our precious ERNs in national health systems, it's great to see this happening!
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JWMDRC
JWMDRC@jwmdrc·
TODAY is Rare Disease Day 2024! At the John Walton Muscular Dystrophy Research Centre we are supporting Rare Disease Day in helping to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. #RareDiseaseDay
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Rare Disease Policy
Rare Disease Policy@RareDiseasesEU·
Great to connect with friends &partners all across the globe for #RareDiseaseDay2024 - a key moment in our calendar, to celebrate achievements but also shout louder than ever about the massive unmet needs for 300 million people living -&still too often dying - with a #RD globally
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Stella Kyriakides
Stella Kyriakides@SKyriakidesEU·
Deeply saddened by the passing of former DG SANTE Deputy Director General John Ryan. He was central to our #COVID19 response, to many of the #HealthUnion initiatives and to the development and implementation of #EUCancerPlan. His memory and his contribution will be cherished.
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Rare Disease Day
Rare Disease Day@rarediseaseday·
⏰ #RareDiseaseDay is three days away! 📣 Since its creation in 2008, #RarDiseaseDay has played a critical role in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose. 👉 Raise awareness: cutt.ly/v8ybk3F
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Rare Disease Policy@RareDiseasesEU·
Delighted to be in Lisbon with you, and to be part of this new project exploring how we can contribute tangibly to the drive towards a more joined-up landscape of EHRs in Europe - keen to consider how the #raredisease community and #ERNs can support these activities! #XpanDH
henrique martins@henriqu13712815

XpanDH project will have its first face to face meeting in Lisbon which includes two open online sessions for general public_ JOIN US if you want to know how the EU is planing to link up Eletronic Health Records across the Union... ISCTE Knowledge and In…lnkd.in/dQK3QCEm

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Rare Disease Policy
Rare Disease Policy@RareDiseasesEU·
I'm looking forward to seeing people at the #EURORDISAwards2023 next week! There is still time to register for online attendance, from the comfort of your living room :-) blackpearl.eurordis.org/attend-support/ #RareDiseaseDay @eurordis
Rare Disease Day@rarediseaseday

Don’t forget to tune in to the @eurordis Black Pearl Awards 2023! 🗓️ 21 February 2023 📍 Online 🎟️ Register now (for free!): cutt.ly/S3WvbAF #EURORDISAwards2023 #RareDiseaseDay

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Rare Disease Policy@RareDiseasesEU·
Looking forward to meeting #raredisease friends and colleagues again in #Brussels next month! Fantastic event in the lead-up to international RD Day. Register asap for early-bird tickets - deadline Monday 16th Jan! Excellent opportunity for networking👍blackpearl.eurordis.org/attend-support/
EURORDIS-Rare Diseases Europe@eurordis

You have just one week left to get your hands on our early bird offer for tickets to the EURORDIS Black Pearl Awards 2023! Get your tickets now, before they’re gone! 🗓️ 21 February 2023 📍 Brussels, Belgium 🎟️ Register: cutt.ly/s12bvh7 #EURORDISAwards2023

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Keşfet

@NCL_RareDisease @jardin_EU_JA @FranzSchaefer @Together4RD @xpandh_project @EU_Commission @EU_EESC @FondazioneBenzi