27 Nov 2025
Register now for the 🆕@ern_reconnet #webinar “Quality of life in Relapsing Polychondritis (RP)” with Prof. @Lupusreference and Dr. Philippe Mertz, moderated by the ePAGs Lisa Matthews and Camelia Bucsa.
🗓️Dec 3rd - 16 CET
✍️Registration is rb.gy/kh6tmw
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15 Oct 2025
Don’t miss TODAY’S @ERNReCONNET webinar at 16 CEST on “Unconventional therapies in connective tissue diseases” with the ePAGs Mrs Magdalena Ciupera and Mrs Vera Guimarães.
✍️Make sure you're registered to participate: rb.gy/d5daf2
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📢 Save the Date!
The 10th ERN BOND Plenary Meeting is on Sept 11 at Leiden University Medical Center 🇳🇱.
This closed event unites HCPs & ePAGs to reflect, share, and shape the future of rare bone disease care & research. ✨
#ERNBOND #HealthUnion #EU4Health
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29 Jun 2025
🧡 Today ERN ReCONNET joins the World Systemic Sclerosis Day 🌻
We support patients & HCPs with dedicated SSc resources, led by top experts & ePAGs.
🔗 reconnet.ern-net.eu/disease-…
🎥 SSc Webinars: bit.ly/SScWebinars
🗞 bit.ly/44wk7La
#WorldSclerodermaDay #ERNReCONNET
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26 Jun 2025
🌟During the #EHA2025 @EHA_Hematology, ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs).
The session was chaired by @MariangelaPell4 , ERN-EuroBloodNet Educational & Patients Program Manager.
👉eurobloodnet.eu/patientsadvo…
#ERNeu #ERNs
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13 Jun 2025
▶️"Exploring the methodologies for creating patients journeys and patient versions of guidelines in collaboration with ePAGs. The pilots of VWD and Burkitt Lymphoma are successful examples on how patient-centered tools can empower people living with rare haematological diseases."
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2 Apr 2025
Don’t miss TODAY’S @ERNReCONNET webinar at 16 CET on “Doctor, can you ask me…? For patients with connective tissue diseases” with the ePAGs Magdalena Ciupera and Vera Guimarães.
✍️Make sure you're registered to participate: bit.ly/4l1DmVA
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27 Mar 2025
Register now for the 🆕@ern_reconnet #webinar “Doctor, can you ask me…? For patients with connective tissue diseases” with the ePAGs Magdalena Ciupera and Vera Guimarães moderated by Prof. Maurizio Cutolo.
🗓️April 2nd - 16 CET
✍️Register here:🆓bit.ly/4l1DmVA
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10 Feb 2025
Another incredible milestone for ERN ReCONNET! 💪✨ Our Working Groups, Disease Groups, ePAGs, and Team came together for our regular Plenary and Board of Network meeting sessions, sharing the outstanding results achieved over the past year and shaping the future of our Network.
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11 Oct 2024
ePAGs are transforming the rare disease care in the EU thanks to:
🧑Patient-centric ERNs
✔️their unique disease insights and diverse skills
➡️their holistic view on healthcare
Patients clinicians = better care for all 🇪🇺🏥
#RareDiseases #PatientAdvocacy #EuropeanHealthcare
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12 Sep 2024
🆕@ern_reconnet #webinar with Prof Diederichsen with ePAGs Olga n @SilkeSchlueter moderated by Prof Lundberg
🎯Audience: #patients #caregivers n family members
📌Disease: #myositis
🗓️Sept. 25th - 4pm
✍️Registration is🆓bit.ly/3WUPBbe
⚙️ on IIM bit.ly/46zEHv2
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25 Jun 2024
In March we started recording a podcast series in which all #ePags or #patientrepresentatives are requested to participate.
Listen to episode 1, with Simone Louisse #Hart4Onderzoek & Jerker Liljestrand #HCMSwedish Society
#podcast #EU4Health #rarecardiacdisease #HCM #achd
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20 Jun 2024
📢On the next @ern_reconnet #webinar we will talk about #SystemSclerosis w ePAGs @iaiaraia @FarrSue01, Prof Matucci Cerinic n Prof Smith!
🎯Patients, caregivers n HCPs
✍️Registration bit.ly/3X2H4F7
⚙️Resources bit.ly/3PAm70r
🌐Webinars bit.ly/3DxXDhi
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17 Jun 2024
💙 @ern_reconnet would like to thank all its ePAGs, experts, n friends for stopping by our booth at #Eular2024 last week, we are proud of your achievements!
🫶Happy and honored to have you all on board with us!
🌐#ERNReCONNET...more than just a Network
reconnet.ern-net.eu/
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13 Jun 2024
🤝Now we continue with a meeting with @ERNEuroBloodNet ePAGs to strengthen ongoing and new collaborations!
#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #EHA2024
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14 May 2024
▶️ EPAGs en acció! Aquest dimecres 15 de maig (17.30 h) comencem amb el primer Espai de Preparació de l'Assemblea General (EPAG).
📥 No t'ho pensis més i inscriu-t'hi ara: shorturl.at/avBH3
#LaCooperativaEtsTu #SomAG2024
ALT Els Epags són els espais de participació de l'Assemblea. Seran els dies 15 de maig, 21 i 23 de maig.
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14 May 2024
▶️ ¡EPAGs en acción! Este miércoles 15 de mayo (17.30h) empezamos con el primer Espacio de Preparación de la Asamblea General (EPAG)
📥 No te lo pienses más e inscríbete ahora: shorturl.at/avBH3
#LaCooperativaEtsTu #SomAG2024
ALT Los EPAGs son los espacios de preparación de la Asamblea. Serán los días 15, 21 y 23 de mayo.
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23 Apr 2024
The introduction by ePAGS “rare diseases hide behind a mask”. Time to network and learn at ERKNet meeting in Venice! @EuRefNetwork @SNephroPed @CHUdeLyon @FiliereORKiD @FiliereOSCAR enjoy the rainbow on beautiful Venice too!
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