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We will be back early September for more rare disease news!
Editorial
European Reference Networks
ERICA: Customisable template documents for ERN registries
EJP RD and ERICA have developed a series a customisable template documents that can be used by the European Reference Networks (ERNs) to obtain the consent of the patients to get their data included in the registry (Informed Consent Form) and to establish their governance structure (Data Access Policy). For EuRRECa and EuRR-Bone this is already implemented and operational.
Endo-ERN: Webinar recording on rare pituitary disorders
The recording of joint webinar from ESE, Endo-ERN and ESPE entitled "Essential insights for the transition from paediatric to adulthood care in rare pituitary disorders" is now available. The webinar was led by the chairs Violeta Iotova from Bulgaria, Nienke Biermasz from the Netherlands and Evangelia Charmandari from Greece. Amongst other presentations, the webinar also included a valuable contribution from Diana Vitali, Italian Endo-ERN patient representative.
Endo-ERN: Webinar on children with Graves’ disease
Endo-ERN will hold a webinar on 29 September 2022 entitled “For a prolonged use of antithyroid drug in children with Graves’ disease”. The webinar will be given by Juliane Leger from Hôpital Universitaire Robert Debré, France and Edward Visser from the University Medical Center Rotterdam, the Netherlands
ERKNet: Bardet-Biedel Syndrome brochure
ERKNet has published its first disease information brochure on Bardet-Biedl Syndrome. The brochure is available in English on the ERN’s website. The brochure contains information on the disease, including its history and the role played by genetics. The brochure also covers symptoms of the disease as well as the diagnostics and treatments available. It will soon be available in multiple languages.
ERKNet: Upcoming webinars on rare kidney diseases
As part of its Postgraduate Curriculum in Rare Kidney Diseases, ERKNet has launched a series of webinars targeting post-graduate physicians who wish to become certified European experts in rare kidney diseases. Registration to these webinars is available on the ERN’s website. The next webinar is entitled " Diabetes Insipidus" and will be held on 13 September 2022.