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New videos: European Reference Networks support both rare disease professionals and patients
Don’t take our word for it – take theirs! Health professionals and patients talk about how the European Reference Networks have positively impacted their lives.
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Upcoming Endo-ERN webinars
In September the following 2 webinars will be organised, one entitled "Wolfram Syndrome" and the 2nd one entitled "Prader Willi Syndrome". Once the date & time has been confirmed, we will update the Endo-ERN website and inform you via our Endo-ERN twitter account. For a complete overview of all our previous and upcoming webinars please visit our website.
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Recording Endo-ERN webinar MTG8: Update on the consensus on congenital hypothyroidism: a patient centered approach
The recording of MTG8 webinar by Michel Polak from Hôpital Universitaire Necker – Enfants maladies about ''Update on the consensus on congenital hypothyroidism: a patient centered approach" is now available for viewing at your own convenience.
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Endo-ERN publication
The following Endo-ERN manuscript has been accepted for publication, entitled: "Disease characteristics of MCT8 deficiency: an international, retrospective, multicentre cohort study" also written with collaboration of six members of the Endo-ERN Main Thematic Group Thyroid. The manuscript was published in the July issue of The Lancet Diabetes & Endocrinology.
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EuRR-Bone
A core group of the European Reference Network on Rare Bone Diseases (ERN BOND) and Rare Endocrine Diseases (Endo-ERN) healthcare providers, patient representatives, affiliated centers and other experts have joined their forces and started EuRR-Bone in April 2020. This EU co-funded project, coordinated by Dr. Natasha Appelman-Dijkstra from the Leiden University Medical Center in the Netherlands, will work closely with the European Registry for Rare Endocrine Conditions project (EuRRECa) to:
- Develop an e-reporting programme (e-REC) that will capture new clinic encounters
- Develop a centralised Core registry aligned with the cope of ERN BOND
- Develop both clinician and patient facing platforms
- Develop disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta and Rare Hypophosphatemia
- Explore linkages between EuRR-Bone and local, disease-specific registries
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Vacancy: PhD Candidate Endocrinology
Looking for an interesting research opportunity? The Division of Endocrinology of the Department of Medicine at the Leiden University Medical Center (LUMC) has a PhD position available in a dynamic, multidisciplinary clinical research team, in which you will study rare endocrine conditions through real world data collected in regiscentretry based European projects, including EuRRECa and EuRR-Bone. Are you the candidate we are looking for?
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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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Steering Committee & Advisory board meeting
On Tuesday June 16th 2020 a virtual Endo-ERN Steering Committee & Advisory Board meeting was held to discuss the past and ongoing activities of Endo-ERN, and to plan the activities of the upcoming months. The meeting was attended 45 persons by representing all 8 main thematic groups and 5 work packages.
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ERN Coordinators Group meeting
A virtual ERN Coordinators Group meeting was organized by DG Santé on Wednesday June 17th. A number of topics were discussed between ERN Coordinators and DG Santé, like ERNs and Covid-19, the enlargement of the networks, CPMS, the announcement of the new chair, Nicoline Hoogerbrugge (ERN GENTURIS) and vice-chair Hélène Dollfus (ERN EYE) of the ERN Coordinators Group.
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Endo-ERN Guideline meeting
End of June, the second two-day meeting of the writing committee for the Endo-ERN Guideline on Pubertal Induction in DSD took place. Not as originally planned, in Sweden, but virtually. It was an inspiring meeting with experts from all over Europe. Good progress was made and it is expected that the first Guideline from Endo-ERN will be presented and published late 2020.
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