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Solve-RD Jul 11
The European Reference Network for rare neuromuscular diseases is one of the 4⃣ core in . Check their latest newsletter ⬇️⬇️⬇️
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MCDS-Therapy Jan 10
Did you know that now connect over 900 healthcare units in 313 hospitals across 26 countries? These healthcare units share knowledge and data to reduce patient travel and speed up diagnosis. Well done to everyone involved!
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Wiebke Junge Feb 28
shows us why European is so important in : It brings better & faster access to , & , provides incentives for developing & enhances collaboration through . 🇪🇺🧪👩‍⚕️👨‍⚕️
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Domenica Taruscio Jan 13
Finito il primo giorno del Meeting di ReCONNECT, breve passaggiata a Pisa by night in attesa della cena After the first day of RD-CONNECT Meeting, a nice walk in Pisa by night
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Vytenis Andriukaitis Jan 30
One of the most amazing examples of collaboration for me is in : allow specialists across to change lives of patients they would not have reached otherwise, by sharing their knowledge & expertise 👩‍⚕️🏥It wasn't for granted, it was build by us for us all.
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Solve-RD Mar 25
We aim to solve a large number of & improve diagnostics of RD patients. It's a EU collaborative effort based on & the UK is an essential partner. The RD community needs UK's participation in ERNs to continue research & improving patients' lives.
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Joanna Dupont Inglis Jun 26
We need investment in and a data strategy - New policy on is also needed based on excellence and outcomes. But above all we need to make Europe the most attractive place to innovate in the area ⁦of rare disease ⁦
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EJP RD Jul 3
Replying to @ERN_RND
Thx u 4sharing it n helping us!
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Oh, Aye, Its him! Jul 15
Replying to @Jeremy_Hunt
How can you help patients have access to (my son's life depends on) if Brexit happens? 1 in 17 of the population are affected by at some time in their lives. Not rare to have a , there are approx 8.000 of them.
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Openapp Feb 18
Calling all , join Hany tomorrow for the webinar at 14.00 CET about CPMS 17.0 new features.
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ERN ReCONNET May 9
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@ERN_RND Jul 17
🔎 Take a look at our July Newsletter w/ reports of our AM & attendance to , call for research funding, first DITF meeting & more 👉 Don’t forget to sign up to our newsletter to receive our latest updates!
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Retina Int. Jul 15
The campaign from is calling on the UK Government and the EU to secure the sustained involvement of the UK in European Reference Networks after
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Oh, Aye, Its him! Jul 13
You have to read the whole tweet. There are approx 8,000 rare diseases. For example, my son and wife are the only people in the UK suffering from their ultra-rare disease with a global corpus of 37. More info on here
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ERN ReCONNET Jul 12
Statement of the Board of Member States on Integration of the to the systems of Member States Member States are encouraged to facilitate the integration of to their healthcare systems to...
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ERN ReCONNET Jul 11
The Board of Member States agrees with the engagement of with industry where appropriate (e.g. on and ) but ⚠️read the complete Statement on ERNs & industry
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Dr Maia Newley Jul 10
I know, I know... Here I am again with my thread on & Brexit. One of my trial drugs is now extremely difficult to access due to pre-Brexit relocation of jobs & other anticipatory changes. This is detrimental to my fight to stay alive.
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eUROGEN Jul 10
Our July newsletter is out and should be hitting your inboxes now! This edition features updates from our annual Strategic Board Meeting and lots of other news. Click to read online and subscribe to future issues.
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ERN ReCONNET Jul 10
🇫🇷 It is not always easy to understand the role of the Health Sectors (FSMR), their interaction with Reference Centres (CRMR) and Competence Centres (CCMR), or (). Follow this 4-minute video to figure it out! (english subtitles 🇬🇧)
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ERN-EYE Jul 3
The first common newsletter to all has just been published by ! You will find in particular an article on the customization of the by ERN-EYE.
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