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Patients with spina bifida face many challenges growing up, including urological problems, which significantly impact their quality of life. Therefore, a multidisciplinary approach is needed, and ERN eUROGEN and...

ERN eUROGEN’s webinar programme began in 2019 and expanded in 2022 to deliver more sessions. To evaluate our audience’s current feelings toward our programme, we ran an annual survey...

The VII edition of UnoSguardoRaro: Rare Diseases International Film Festival (RDIFF) will shine a spotlight, not on diseases, but on people, their stories and their different way of living...

The final meeting of the Orphanet Data for Rare Disease (OD4RD) project led by Orphanet took place in Paris (FR) on 6 October 2022 and was attended by Darren...

The 24 ERN Coordinators meet regularly with the European Commission (EC) to drive forward the work of the ERNs, and 4 October 2022 saw the first face-to-face ERN Coordinators...

Following the covid-19 pandemic and two years of online-only meetings, the ERN eUROGEN Coordination Team was delighted to hold an in-person Strategic Board meeting from 13-14 September 2022, in Nijmegen-Lent (NL)....

Darren Shilhan, ERN eUROGEN Lead IT & Data Performance Analyst, writes: On 1 September 2022, the process to evaluate the ERNs and their Full Members will officially begin. This...

Sharing Knowledge on Treatment for Children with Anorectal Malformation: A Successful ERN Exchange Programme Group Visit Dr. med. Eberhard Schmiedeke, from the Kinderchirurgie team at Klinikum Bremen-Mitte (DE), writes: More than 20...

“We at the World Health Organization are on your side,” said Rüdiger Krech, WHO Director of Health Promotion, giving the keynote address at the Rare Diseases International informal side-event to the...