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nickname76.bsky.social
#readandplay (448)
#MusicChallenge
#MusicSky

Belle and Sebastian - Like Dylan in the Movies
www.youtube.com/watch?v=ePAg...
August 23, 2025 at 4:19 PM
leenunn.bsky.social
#MusicInMusic

"Well, if they follow you,
Don't look back,
Like Dylan in the movies."

music.youtube.com/watch?v=ePAg...
Belle and Sebastian - Like Dylan in the Movies
YouTube video by Jeepster Recordings
music.youtube.com
November 8, 2025 at 1:21 PM
lamacq.bsky.social
vamooooos! que ya es jueves, ya ha pasado casi media semana.

no mireis atrás.

venirse!

www.youtube.com/watch?v=ePAg...
Belle and Sebastian - Like Dylan in the Movies
YouTube video by Jeepster Recordings
www.youtube.com
September 24, 2026 at 7:20 AM
erneurogen.bsky.social
At #EAU25, John Osborne, ERN eUROGEN ePAG Chair, spoke on “Patient Power” 💪
Highlights: patients shape guidelines, care pathways & more. 2025 strategy = QoL & awareness.
🔗 Learn more: bit.ly/41ScgYl
#ePAG #RareDisease #UroSoMe #EUfunded
March 24, 2025 at 9:00 AM
andrewsehmann.com
Playing this with the SCPhil Saturday and it fucking rips m.youtube.com/watch?v=ePag...
My Neighbor Totoro Orchestra Stories - 07. Cat Bus
YouTube video by Ghibli Sound Archive
m.youtube.com
August 19, 2025 at 9:41 PM
emmamgroarke.bsky.social
Final results of the EBMT RACE study randomizing hATG/CSA/EPAG v IST alone. Promising long-term data! @ash-hematology.bsky.social #ASH24 #BMFsm
December 8, 2024 at 12:57 AM
gonzalotorne.bsky.social
Mandándole rola a la @meriendismo.bsky.social para sus formularios y su escribición: www.youtube.com/watch?v=ePAg...
Belle and Sebastian - Like Dylan in the Movies
YouTube video by Jeepster Recordings
www.youtube.com
November 17, 2025 at 6:39 PM
erknet.bsky.social
𝐄𝐔 𝐃𝐆 𝐒𝐀𝐍𝐓𝐄 𝐕𝐢𝐬𝐢𝐭🇪🇺

We had an amazing day hosting Donata and Alina as they checked out our network, chatting about everything—from our registry to ePAG involvement, quality improvements & more.

Huge thanks for their genuine interest. Together, we’re making rare kidney disease care even stronger 💪✨
February 20, 2025 at 6:02 PM
erneurobloodnet.bsky.social
🌟During the #EHA2025 , ERN-EuroBloodNet held a highly productive meeting with European Patient Advocacy Groups (ePAGs).

👉https://eurobloodnet.eu/patientsadvocacy/epag/

@eurordis.bsky.social @ehc-news.bsky.social @pnhsupport.bsky.social @pnhglobalalliance.bsky.social @ulbruxelles.bsky.social
June 26, 2025 at 12:24 PM
flaviagalletti.bsky.social
Thank yoy @erknet.bsky.social 🫶🏽 for an inspiring 3-day Annual Meeting in Leuven! Grateful to contribute to this ERN and amazing ePAG team ⭐️ Exciting #ADPKD & #ARPKD projects ahead 🎉
May 22, 2025 at 8:50 PM
chthonicthorns.bsky.social
Upset by her eternal pregnancy, she asked the god of wisdom Thoth for help, who then gambled with the moon god Khonsu in a game of Senet for 5 extra days of moonlight. Thoth won, forming the light into the Epag days.
December 26, 2024 at 7:35 PM
erneurogen.bsky.social
#PatientRecognitionWeek highlights the power of shared decision-making! 🗣️ Patients are at the ❤️ of ERNs & shape our work through our #ePAG, ensuring their voices are heard.

🔍 Learn more: https://buff.ly/42KIVkR

#SharedDecisionMaking #PatientEmpowerment #EUfunded #EU4Health
Patients (ePAG) - ERN eUROGEN
Healthcare Providers Patients (ePAG) Supporting Partners Collaborations Coordination Team Joining ERN eUROGEN Patients (ePAG) Patients are at the centre of ERNs. A fundamental principle is that they…
buff.ly
February 5, 2025 at 10:00 AM
jeromebertherat.bsky.social
An excellent lecture by Johan de Graaf, Chairman of the Dutch Pituitary Foundation, with an overview of the ePAG activities within ENDO-ERN (European Reference Network for Rare Endocrine Diseases). Lots of ideas and a model for FIRENDO patient associations 👍
December 4, 2024 at 9:31 PM
thene.bsky.social
truly feel this. (and by my count, today is the 4th epag day here in Somerville, and Sirius will rise on Wednesday).
August 17, 2026 at 5:53 PM
erneurogen.bsky.social
ERN eUROGEN at #EAU26 in London 🎉 — Thematic Session, ePAG presentations, roundtables, and a proud moment as Rob Cornes received the EAU Patient Advocacy Medal of Excellence 🏅 Full report: eurogen-ern.eu/ern-eurogen-...

#EUfunded #EU4Health @jardinjointaction.bsky.social
@uroweb.org
ERN eUROGEN at EAU26: Bringing Rare Disease Expertise to London - ERN eUROGEN
The annual European Association of Urology (EAU) congress held this year in London from 13 to 16 March provided ERN eUROGEN with an outstanding platform to share our work, connect with the wider urolo...
eurogen-ern.eu
March 26, 2026 at 10:48 AM
ern-rnd.bsky.social
10 minutes with the Danish Queen - our ePAG John Gerbild talked to the Queen about how life is like with a rare diagnosis at the Nordic Rare Disease Summit in Copenhagen.
September 17, 2025 at 2:22 PM
retinaint.bsky.social
Today, our CEO @avrilbdaly.bsky.social, as President of @eurordis.bsky.social, is joining leaders across Europe to push for a stronger, more connected research & innovation ecosystem for rare diseases. Key discussions are highlighting the power of ERNs. #HLMRare #RareDiseases #ERN_EYE #Innovation
[Image description: Dominique Sturtz, Chair of the ERN-EYE EPAG, Avril Daly, CEO RI and Prof. Helene Dollfus, Coordinator, @erneyenetwork attend the High Level Meeting (HLM) on Rare Disease Policy in Brussels on December 10th.]
December 11, 2025 at 11:02 AM
snovelli.bsky.social
First-ever comparison between haplo-HSCT using modified post-transplantation cyclophosphamide and combined IST+EPAG.
www.astctjournal.org/article/S266...
Comparison of haploidentical-hematopoietic stem cell transplantation using modified post-transplantation cyclophosphamide and eltrombopag combined with immunosuppression for the treatment of severe ap...
Severe aplastic anemia (SAA) is a life-threatening disease mainly caused by abnormal immune function in the form of T lymphocyte hyperfunction 1. SAA and very SAA (VSAA) can be treated with human leuk...
www.astctjournal.org
August 9, 2025 at 7:43 PM
erneurogen.bsky.social
🔵 ERN eUROGEN Thematic Session
⏰ 15:30–17:00 | Blue Area, Victoria 6

Happening this afternoon at #EAU26 - clinical updates + ePAG presentations on penile cancer and anorectal malformation. All welcome!

#ERNeUROGEN #RareDiseases @ec.europa.eu @jardinjointaction.bsky.social @uroweb.org
March 15, 2026 at 12:16 PM
n-ables.bsky.social
🌟 Save the Date: 30th June 2026 🌟

The third webinar in our Nasen Twilight Talks series will be delivered by our Education Professionals Advisory Group (EPAG)! 📚

🔗 Sign-up for FREE here: buff.ly/3AYI1Y3

#BrainInjury #FreeTraining
June 26, 2026 at 7:02 AM
calancdkl5.bsky.social
Back in Rome for the 5th “In Search of Lost Time” workshop which this year is focusing on focal cortical dysplasia’s and auto-immune disease with epilepsy, view from the hotel entrance #rareepilepsy #cdkl5 #epag
December 16, 2024 at 7:20 AM
erknet.bsky.social
🧪 FAQ: ERKNet Patient-Initiated Research
Have a project idea on rare kidney disease? Patient reps & ePAG members can apply. ERKNet supports one meeting (≤6 people) to launch approved projects.
Apply: https://www.erknet.org/patients/research/research-proposals-from-patients

#ERKNet #RareDisease
August 27, 2025 at 2:03 PM
erneurogen.bsky.social
Peter Mulders & Michelle Battye Radboudumc chaired the #EAU25 ERN eUROGEN session on rare urology. Topics:
⚡️WS1: Congenital anomalies eurogen-ern.eu/ws1
⚡️WS2: Functional conditions eurogen-ern.eu/ws2
⚡️WS3: Tumours eurogen-ern.eu/ws3
⚡️ePAG bit.ly/41ScgYl
#EUfunded #RareDisease
March 22, 2025 at 3:48 PM
erneurobloodnet.bsky.social
🌟This morning at the #EHA2025 Patient Joint Symposium, Angelo Loris Brunetta, representing the Thalassaemia International Federation as an ePAG member of ERN-EuroBloodNet, chaired the panel and introduced the topic "Advancing Quality of Life as a Measurable Outcome in Clinical Trials."

#hematology
June 12, 2025 at 3:54 PM
ern-rnd.bsky.social
#ERN National Day in Denmark: This year the focus was on workshops around similarities and differences between ERNs, in order to find a national approach to ERNs and a common use of orphan codes. Among them our ePAG John @gerbild.bsky.social and patient advocate Tenna Toft Sylvest.#
January 21, 2025 at 4:37 PM