ERN eUROGEN

28/02/2026

We are so proud of our Dalia, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing her story on .

She advocates for patients with anorectal malformation (ARM), because her son was born with this condition, which we cover as part of our Workstream 1: Rare Congenital Uro-Recto-Genital Anomalies: https://eurogen-ern.eu/workstreams-and-expertise/workstream-1/ 💙

Dalia has been highly involved in our patient information on ARM: https://eurogen-ern.eu/updated-ern-eurogen-resources-for-anorectal-malformations/ 💙

She was also one of the instigators of our consensus meeting on Vaginal Replacement in ARM: https://eurogen-ern.eu/vaginal-replacement-in-arm-consensus-meeting-held/ 💙

👉 Discover Dalia's full story: https://jardin-ern.eu/patient-story/dalias-story/

European Commission Jardin Joint Action AIMAR - Associazione Italiana Malformazioni Anorettali

A caregiver shares her experience of supporting a son with anorectal malformation (ARM) and the importance of coordinated rare disease care.

28/02/2026

We are so proud of our Anna, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing her story on .

Within our ePAG, Anna represents Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS), a condition that we cover under our Workstream 2: functional urogenital conditions requiring highly specialised surgery (adults): https://eurogen-ern.eu/workstreams-and-expertise/workstream-2/ 💙

👉 Discover Anna's full story: https://jardin-ern.eu/patient-story/annas-story/

EEuropean CommissionJJardin Joint Action Aici - Associazione Italiana Cistite Interstiziale

A patient’s story of interstitial cystitis (IC/BPS), advocacy, and connection through ERN eUROGEN, highlighting community and support for rare diseases.

28/02/2026

We are so proud of our Lieke, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing her story on .

Because her daughter was born with Bladder Exstrophy, Lieke advocates for her and other patients with this condition, which we cover as part of our Workstream 1: Rare Congenital Uro-Recto-Genital Anomalies: https://eurogen-ern.eu/workstreams-and-expertise/workstream-1/ 💙

👉 Discover Lieke's full story: https://jardin-ern.eu/patient-story/liekes-story/

European Commission Jardin Joint Action

28/02/2026

We are so proud of our John, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing his story on .

John is our ePAG Chair, and represents patients with Pe**le Cancer, a condition that we cover under our Workstream 3: Rare Urogenital Tumours:https://eurogen-ern.eu/workstreams-and-expertise/workstream-3/ 💙

He has developed an international survey about the condition: https://eurogen-ern.eu/penile-cancer-insights-from-a-patient-led-survey/ 💙

John is also the instigator of the Rare PREPARE project, which aims to develop a Question Prompt List that all patients and clinicians can use to prepare for rare disease consultations. 💙

👉 Discover John's full story: https://jardin-ern.eu/patient-story/johns-story/

**leCancer European Commission Jardin Joint Action

28/02/2026

We are so proud of our Frans, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing his story on .

Frans has recently joined our ePAG to represent Upper Tract Urothelial Carcinoma, a condition that we cover under our Workstream 3: Rare Urogenital Tumours: https://eurogen-ern.eu/workstreams-and-expertise/workstream-3/ 💙

👉 Discover Frans' full story: https://jardin-ern.eu/patient-story/frans-story/

European Commission Jardin Joint Action

28/02/2026

We are so proud of our Kate, a member of the ERN eUROGEN European Patient Advocacy Group (ePAG), for sharing her story on .

Kate has been highly involved in patient empowerment and developing a flyer, "A Journey from Isolation to Advocacy: https://eurogen-ern.eu/patients-take-the-stage-sharing-stories-of-empowerment-and-advocacy/ 💙

She also contributed to our patient information on anorectal malformations: https://eurogen-ern.eu/updated-ern-eurogen-resources-for-anorectal-malformations/ 💙

👉 Discover Kate's full story: https://jardin-ern.eu/patient-story/kates-story/

European Commission Jardin Joint Action

28/02/2026

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

19/02/2026

🚨 TONIGHT! 🇺🇦 Paediatric Urology Webinar Series for Ukraine – Introduction.

We are proud to launch our third series of ERN eUROGEN Ukrainian webinars.

🗓 Thursday 19 February ⏰ 18:00 CET / 19:00 EET
🎙 Prof. Dr. Giovanni Mosiello & Dr. Natalya Zymak
👉 Register here: https://tinyurl.com/eurogen19feb26

This new series expands beyond spinal dysraphisms to explore a broader range of complex and rare paediatric urology conditions. The session will also include a short review of the previous two series and key advances discussed by specialists.

European Commission Jardin Joint Action European Association of Urology European Association of Urology Nurses (EAUN) ESPU - European Society for Paediatric Urology ESPU-Nurses

18/02/2026

🚨 TONIGHT! 🇺🇦 Improving Rare Disease Care in Ukraine: Access to ERNs and Expert Resources.

This joint Rare Endo-ERN and ERN eUROGEN webinar will explore how Ukrainian clinicians and patient advocates can collaborate with ERNs to improve care for people living with rare diseases.

🗓️ Wednesday 18 February 2026
⏰ 17:00–18:45 EET / 16:00–17:45 CET
👉 Register now: https://events.zoom.us/ev/As2sbnhOK7Zyx9B2wc3abVZGyLJ_4jGP-o6poesncdPEbFSDgtjC~Am1JNrtmfL8hY9nq43owqXcULdTUn9U6GOIxcK0SmwWoaKqKF5_okahnUw

💡 Includes an ERN overview, how to use CPMS, a case study, and Q&A.

🇺🇦 Ukrainian subtitles available.

🎙️ With:
- Alberto Pereira (Endo-ERN Coordinator)
- Peter Mulders (ERN eUROGEN Coordinator)
- Tetiana Kulesha (Orphan Diseases of Ukraine)

European Commission Jardin Joint Action

17/02/2026

🇺🇦 Paediatric Urology Webinar Series for Ukraine – Introduction.

We are proud to launch our third series of ERN eUROGEN Ukrainian webinars.

🗓 Thursday 19 February ⏰ 18:00 CET / 19:00 EET
🎙 Prof. Dr. Giovanni Mosiello & Dr. Natalya Zymak
👉 Register here: https://tinyurl.com/eurogen19feb26

This new series expands beyond spinal dysraphisms to explore a broader range of complex and rare paediatric urology conditions. The session will also include a short review of the previous two series and key advances discussed by specialists.

European Commission Jardin Joint Action European Association of Urology European Association of Urology Nurses (EAUN) ESPU - European Society for Paediatric Urology ESPU-Nurses

16/02/2026

🇺🇦 Improving Rare Disease Care in Ukraine: Access to ERNs and Expert Resources.

This joint Rare Endo-ERN and ERN eUROGEN webinar will explore how Ukrainian clinicians and patient advocates can collaborate with ERNs to improve care for people living with rare diseases.

🗓️ Wednesday 18 February 2026
⏰ 17:00–18:45 EET / 16:00–17:45 CET
👉 Register now: https://events.zoom.us/ev/As2sbnhOK7Zyx9B2wc3abVZGyLJ_4jGP-o6poesncdPEbFSDgtjC~Am1JNrtmfL8hY9nq43owqXcULdTUn9U6GOIxcK0SmwWoaKqKF5_okahnUw

💡 Includes an ERN overview, how to use CPMS, a case study, and Q&A.

🇺🇦 Ukrainian subtitles available.

🎙️ With:
- Alberto Pereira (Endo-ERN Coordinator)
- Peter Mulders (ERN eUROGEN Coordinator)
- Tetiana Kulesha (Orphan Diseases of Ukraine)

European Commission Jardin Joint Action