📬 ERN ReCONNET Newsletter n.31 is out!
A network in full motion — read the April 2026 edition here 👇 bit.ly/NewsERNApr26
Not subscribed yet? →bit.ly/Sub_NewsReCONNET
#ERNReCONNET #RareDiseases #EuropeanReferenceNetworks
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Mar 26
At today’s conference on cross-border healthcare& #EuropeanReferenceNetworks, I stressed: too many patients are still unaware of their rights to care across 🇪🇺.
With health package, we can build Europe where access to high-level care is not a privilege but a reality for everyone.
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16 Sep 2025
Are you living with or caring for someone with a #RareDisease? Are you a #RareDisease advocate?
Please take 5 minutes & complete a short survey to help the @HSELive #NationalRareDiseasesOffice to learn about your awareness of #EuropeanReferenceNetworks
bit.ly/4mmzoWZ
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14 May 2025
#ESPGHAN2025 here we go! Come see us at Stand 64 👋
#eu4health #dgsante #hadea #erntransplantchild #europeanreferencenetworks #hadea #dgsante #paediatrictransplantation
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28 Feb 2025
🔬 Rare patients. Rare experts. Real outcomes.
💙 24 #EuropeanReferenceNetworks cover a range of #rare #complex #lowprevalence diseases —ensuring patients get the expert care they deserve.
🔗 Learn more: bit.ly/4hMPOXk
#EUfunded #HealthUnion #EU4Health #RareDiseaseDay
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28 Feb 2025
🏥 Rare patients! #EuropeanReferenceNetworks enable patients across the EU to access #raredisease experts—without needing to travel! 🚀 Ask your doctor about virtual consultations & learn more here: bit.ly/43uJ38v #EUfunded #HealthUnion #EU4Health #RareDiseaseDay
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28 Feb 2025
👨⚕️👩⚕️ Attention EU/EEA doctors! You can access #raredisease expertise via #EuropeanReferenceNetworks. Specialists across the EU offer virtual consultations for complex cases. Connect with an expert today! 🔗 Learn more: bit.ly/4kgfhdy #EUfunded #EU4Health #RareDiseaseDay
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28 Feb 2025
💜🌍 Today is #RareDiseaseDay! 🌎💜
Join us to raise awareness and generate change for the 300 million people worldwide living with a #RareDisease, their families and carers!
@rarediseaseday
@eurordis
#EuropeanReferenceNetworks
#ERNeu
eurobloodnet.eu/news/635/rar…
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📢 New booklet: European Reference Networks – A Success Story for Patients living with a Rare Disease
🔗Read it here: health.ec.europa.eu/publicat…
#RareDiseases #EuropeanReferenceNetworks #ERNs #PatientCare #rRareDiseaseDay
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4 Feb 2025
TransplantChild Training and Education Work Package, led by Prof. Kalicinski, will launch 10 accredited webinars💻👩⚕️
📢Stay tuned to keep up with our activities!🗓️
#Education #Training #PaediatricTransplantation #ERNTransplantChild #Europeanreferencenetworks #ERNs #HaDEA #EU
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29 Nov 2024
📺 Watch live from #Budapest!
@EU_EESC conference on #RareDiseases @EESC_TEN @bmiltovica
🇪🇺 The EU needs a comprehensive policy framework #EuropeanReferenceNetworks
Web streaming: europa.eu/!nNRFm7
👉 Media inquiries: press@eesc.europa.eu
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23 Jul 2024
Today is the world Sjogren's syndrome day. Let’s celebrate the rarity of each story. Together we are stronger. #Rarediseases #EuropeanReferenceNetworks #SjögrenDisease #WorldSjögrensday
Look at the resources developed by ERN ReCONNET here: bit.ly/SS_ERNReCONNET
@SjogrenEurope
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27 May 2024
Sharing good practices in #rarediseases is crucial for improving the care of patients.
Don’t miss the chance to register for this meeting!
Registration bit.ly/3JZL7u4
🎯 Sharing Good Practice @ern_reconnet event, May 30th, 3-5 pm CET.
#EuropeanReferenceNetworks
15 May 2024
📣@ern_reconnet EVENT is scheduled for May 30th, 3-5 pm CEST!
🎯Good Practice Sharing Initiative led by Dr @SaraTalarico2 n ePAG @iaiaraia
🗒️Details bit.ly/3QJW1rH
✍️Registration bit.ly/3JZL7u4
ℹ️ on Research n Quality of Care WG bit.ly/3UGCFVh
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19 Apr 2024
➡️Our coordinator @TeresinhaEvange will present today: "#EuropeanReferenceNetworks: a European model of cross-border collaboration in RDs diagnosis and care" at #ProDGNEmeeting2024 at 15:30 CEST!
Register here 👉bit.ly/4aWj61Q
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💻 Join our next ERN-Skin Webinar
📆 30th April 2024, 1:00 pm – 2:00 p m CET
👉 Register here: ec.europa.eu/eusurvey/runner…
#ernskin #webinar #europeanreferencenetworks #DNA #Albinism #photosensitivity
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5 Mar 2024
How can we help improve #PatientPartnership in the #EuropeanReferenceNetworks?
Let’s find out together! Join our first Patient Partnership Webinar of 2024!
🔗Register now: go.eurordis.org/4Ui184
ALT NEW WEBINAR - Improving Patient Partnership. 12 March 2024, 6pm - 6:45 pm CET. Features photo of Jean Philippe Placon.
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4 Mar 2024
What is our role in the #EuropeanReferenceNetworks?
✊ We empower patient representatives with the skills needed to engage with doctors.
🗣️ We advocate for ERNs' sustainability.
🤝 We establish partnerships within the rare disease ecosystem to enhance the networks' development.
ALT A photo taken of the European Patient Advocates (ePAGs) shortly before the launch the ERNs. The words "Empower. Advocate. Partner." are written over the top.
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29 Feb 2024
⭐️The importance of #EuropeanReferenceNetworks, such as @ERN_eUROGEN, has been emphasised by @SkyriakidesEU, Commissioner for @EU_Health, in her statement on #RareDiseaseDay 2024:
🔗ec.europa.eu/commission/pres…
#RareDisease #ERNs #HealthUnion #StrongerTogether 💪 @rarediseaseday
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29 Feb 2024
Let’s celebrate the Rare Disease Day, together we are stronger!
#EuropeanReferenceNetworks #RareDiseaseDay2024 #RareDiseases @ern_reconnet
29 Feb 2024
💚💗💙 Happy Rare Disease Day from the @ern_reconnet!
🤝 This year for the 1st time #PisaTower n the facade of the @operapadrepio hospital in San Giovanni Rotondo (Foggia) joins the forces to color this unique day 🌈
🔗 bit.ly/3UYCu9D
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