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Did you know that there are 24 European Reference Networks (ERNs) established by the EU Commission? On this Rare Disease Day we would like to draw your attention to other European Reference Networks (ERNs) that have resources that might be of interest to you.
Enjoy the read! Endo-ERN team |
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NEW: Materials from the European Commission for Rare Disease DayTo mark Rare Disease Day, the European Commission published several resources celebrating the dedication and expertise of the European Reference Networks that make a tangible difference to the lives of patients with rare diseases and their families.
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INFO: ERN BONDERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentine. ERN BOND includes now 50 healthcare providers and their specialist department on rare bone diseases from 19 EU Member states. Endo-ERN and ERN BOND share the European Registries for Rare Endocrine and Bone Conditions (EuRREB). The registries aim is to maximize the opportunity for all patients, healthcare professionals and researchers to participate and use high-quality, patiened-centered registries for rare endocrine and bone/mineral conditions. |
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INFO: ERNs for rare cancerEURACAN is the ERN for Rare Adult Solid Tumors. The network is comprised of 101 highly specialised cancer centres across 26 European countries plus Norway, 14 European Patient Advocacy Groups, international scientific societies and national rare cancer networks. There is a dedicated page for Rare Endocrine cancer. PaedCan is the ERN on Paediatric Cancer. The network is comprised of 90 members across 28 European countries plus Norway. There are Virtual Tumour Boards.
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INFO: eUROGENERN eUROGEN is the ERN for rare uro-recto-genital diseases and complex conditions. The network is comprised of 56 healthcare providers from 20 member states. Each year, these HCPs care for around 12,500 patients diagnosed with rare urological diseases and complex conditions with the networks workstream and expertise areas. |
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INFO: MetabERNMetabERN focuses on inherited metabolic diseases. The network is comprised of 91 medical centres in 27 countries plus Norway, and 39 patient organisations. Newborn screening (NBS) is a vital public health program that enables the early detection of serious rare conditions in newborns. |
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REGISTER: Upcoming webinarsEndo-ERN experts continue to deliver informative webinars that increases the expertise in the network. Accreditation is being sought for these webinars when possible, check individual listings. March 5: Care of adult patients with Klinefelter syndrome March 17: Long-term outcomes in CAIS June 3: Novel monitoring tools to detect chronic over- or under treatment in children with CAH Register now for these upcoming webinars. Remember if you cannot attend live, register anyway and you will receive a recording.
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REGISTER: Upcoming Conferences and Training EventsUpcoming events and e-learning that might be of interest to you or your team: Endo-ERN Endorsed: 5th CAre for PITuitary Adenoma Leiden (CAPITAL) Course Endo-ERN Endorsed: 24th Advanced Postgraduate Course on Growth and Growth Disorders Endo-ERN Endorsed: Symposium Prader-Willi Syndrome Endo-ERN Endorsed: VIIIth ISPAD/VAPES Postgraduate Course and Conference - Diabetes and Rare Disease Course ESE Young Endocrinologists and Scientists (EYES) 16th European Paediatric Neurology Society Congress Our colleagues at ERN-EYE have an e-learning course on Inherital Retinal Diseases which might be of interest. |
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