Dear ERKNet members, partners and friends, ERKNet in collaboration with the Eurodis three other ERNs conducted a pilot H-CARE Survey aimed at determining patient experience and satisfaction with their care within ERNs. The survey that included a modified version of the PACIC (Patient Assessment of Care for Chronic Conditions) questionnaire was disseminated online and on-site […]
The ERKNet working groups on metabolic and stone disease is pleased to present you a survey on the rare condition of FANCONI BICKEL SYNDROME, also known as GLYCOGENOSIS XI.
The ERKNet Virtual Annual Meeting was a challenging project but proved to be a great success. More than 220 participants attended the 5-day-long meeting via the Zoom platform. The conference included 2 plenary, 9 workgroup and 7 taskforce sessions.
The ERKNet Virtual Annual Meeting was a challenging project but proved to be a great success. More than 220 participants attended the 5-day-long meeting via the Zoom platform. Numerous ePAGS took part in it and contributed with their knowledge and experiences. The conference included two plenary, nine workgroup and seven taskforce sessions. The Meeting was a great […]
Within the space of just 4 weeks, Cystinosis Network Europe and Cystinosis Ireland turned the disappointment of cancelling the highly anticipated biennial International Cystinosis Conference 2020 (which had been scheduled to be held in Dun Laoghaire next July) and converted it into a roaringly successful virtual conference which was held on Saturday 25 April 2020. […]
