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ERN Animation clip for patients and health professionals subtitled and dubbed in EU languages is now available
This video explains to patients affected by rare, low prevalence and complex diseases what the European Reference Networks (ERN) are and how they might support them to identify diagnosis or treatment, in the case their health professional considers the support of the ERNs is necessary.
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Endo-ERN webinar: Wolfram syndrome
On Wednesday November 11th at 15:00 – 16:00 CET on behalf of MTG3 an Endo-ERN webinar about “Wolfram syndrome: Diagnostics, Biomarkers, and Therapeutic Options” is organised. The Endo-ERN webinar will be held by Prof Fumihiko Urano from the Washington University, United States.
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Endo-ERN webinar: Silver-Russell syndrome
On Tuesday November 24th at 17:00 – 18:00 CET on behalf of MTG5 an Endo-ERN webinar about “Diagnosis and management of Silver–Russell syndrome, a multidisciplinary care is necessary” is organised. The Endo-ERN webinar will be held by Prof Irene Netchine from Assistance Publique – Consortium Cochin, Robert Debré, Necker, St Antoine, La Pitié Salpétrière, Trousseau University Hospitals in France.
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Recording Endo-ERN webinars
The recording of MTG3 webinar by Timothy Barrett about "Wolfram syndrome" is now available for viewing at your own convenience.
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H2020 proposal "ERICA"
The submitted H2020 proposal, entitled ‘European Rare dIsease research Coordination and support Action’ (ERICA) on behalf of the ERN Research Working Group, has received a positive evaluation and is therefore invited to the grant preparation phase! All 24 ERNs will be represented as official beneficiary by their coordinator institutes. In addition, several other important stakeholders will be involved as official beneficiary. Prof. Alberto Pereira (LUMC), co-chair of the ERN Research Working Group, will coordinate this new, ambitious project. We are thankful for the already constructive collaborative support and look very much forward to develop this project successfully!
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e-REC drop-in session
e-REC (e-Reporting Of Rare Conditions) is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of the rare conditions covered within networks such as Endo-ERN and ERN-BOND.
The platform which was originally launched in 2018 as part of the EuRRECa project is also being used by the EuRR-Bone project and is open to all centres that look after people with rare endocrine or bone conditions, it allows continuous reporting of new clinical case encounters which is one of the core indicators of activity and also enables the clinical networks to objectively map the conditions and related activity.
Since April 2020, close collaboration with the ESE Rare Disease Committee, has also led to the extension of the platform for reporting COVID-19 infection in a patient with an existing endocrine or bone condition. To encourage active participation in e-REC, the teams in Glasgow and Leiden have arranged a series of drop-in sessions to demonstrate the e-REC platform and field any questions you may have. Starting from 13/11/2020, these sessions are scheduled on every second Friday of the month at 2pm (CET). Ad hoc drop-in sessions at other times can be arranged upon request.
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Publications
We are proud to announce that several (Endo-ERN) manuscripts have been published:
- ENDOCRINOLOGY IN THE TIME OF COVID-19: Clinical management of neuroendocrine neoplasms (NENs)
- Clinical benefits of sex steroids given as a priming prior to GH provocative test or as a growth-promoting therapy in peripubertal growth delays: Results of a retrospective study among ENDO-ERN centres
- A Consensus on the Diagnosis and Treatment of Acromegaly Comorbidities: An Update
- Time to Diagnosis in Cushing’s Syndrome: A Meta-Analysis Based on 5367 Patients
- Acromegaly and joint pain: is there something more? A cross-sectional study to evaluate rheumatic disorders in growth hormone secreting tumor patients
- Second-Day Morning Cortisol Levels after Transsphenoidal Surgery Are Accurate Predictors of Secondary Adrenal Insufficiency with Diagnostic Cut-Offs Similar to Those in Non-Stressed Conditions
- Recommendations for Diagnosis and Treatment of Pseudohypoparathyroidism and Related Disorders: An Updated Practical Tool for Physicians and Patients
- Prevalence of primary aldosteronism and association with cardiovascular complications in patients with resistant and refractory hypertension
- Predictors of recurrence of pheochromocytoma and paraganglioma: a multicenter study in Piedmont, Italy
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2nd Call Research Mobility Fellowship is now open
The call for Research Mobility Fellowships aims to financially support PhD students and medical doctors in training working in ERN-Full Member or Affiliated Partner institutes to undertake short scientific visits (secondments) fostering specialist research training outside their countries of residence and within one of the ERN-Full Member or Affiliated Partner institutes.
PhD students and medical specialists in training, who have finished their first year of training, can apply for a fellowship within this call. The duration of these short scientific visits (secondments) can be 1 to 3 months and the research training must be completed within 18 months after the application approval.
Applicants that are selected will receive a reimbursement for travel up to 400€ for the entire fellowship and accommodation expenses up to 2000€ per month.
Apply before 13 November
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Endo-ERN Covid-19-webpage
Endo-ERN has created a page dedicated to Covid-19, especially for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions. This page is continuously updated with the most relevant information from EU countries and European initiatives. Already 12 countries provided relevant information. Interested? Click here!
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