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Rare Disease Day
29 February 2020 is dedicated to the international Rare Disease Day, coordinated by EURORDIS. On and around this day hundreds of (patient) organisations from countries and regions all over the world will hold awareness-raising activities.
In Padova, Italy, a Rare Diseases meeting on research is organized. The programme can be found here. MTG 3 Adult chair Pietro Maffei is part of the Scientific Committee.
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EJP RD - ERN internal training and support program calls
EJP RD has opened funding calls for training programs based on two main components: research mobility fellowship and research training workshops.
These calls are established for PhD students, Medical Doctors and Researchers. Scientific visits of 2 weeks to 3 months fostering specialist research training will be provided during the fellowships. The workshops will be organized for 2 days.
Deadline for submissions for the research mobility fellowships is 16th of March 2020. For the research training workshops, the deadline for submission is 2nd of March 2020.
For more information, visit the website.
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Upcoming webinar
On Friday February 14th at 15:00 – 16:00 CET an Endo-ERN webinar about “Prophylactic thyroidectomy in Children with MEN2” is organized.
Register for this webinar.
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CPMS update
During the Endo-ERN General Assembly in Italy, Isabel Mönig and Daniëlle Steenvoorden, employees of the Operational Helpdesk, will give a presentation about the actions and results of CPMS during last year. The outcome of the survey about the use of CPMS will be presented as well as further steps that have to be taken from now on. They will also be available for individual help regarding CPMS.
If you have any questions regarding CPMS, please email the CPMS helpdesk. CPMSHelpdesk@Endo.ern.net.eu
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FAQ Brexit
The Withdrawal Agreement as agreed between the Parties in October 2019 are entered into force on 1 February 2020. UK healthcare providers can continue participating in the ERNs as members and they will continue to have access to the Clinical Patent Management System (CPMS) and other ERN IT tools and databases until the end of the transitional period (31 December 2020).
To see which others implications Brexit has for the ERNs, click here.
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Searchable tool European Commission
The European Commission website now hosts a searchable interface with details about ERNs for the public to search, including multi-lingual factsheets about ERNs and locations of members and partners. Visit the webpage here.
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ECE 2020
The 22nd Annual ECE congress will be held 23-26 May 2020 in Prague, Czech Republic.
Endo-ERN will be present at ECE 2020 with a symposium, lunch hub session and a shared stand with EuRRECa and will held its Steering Committee & Advisory Board meeting. The programme of all Endo-ERN activities can be viewed here.
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Newsletter EuRRECa January 2020
EuRRECa has recently published their newsletter of January 2020. The newsletter can be viewed here.
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Patient information materials MTG7
New information materials for MTG7: Sex Development & Maturation have become available at the Endo-ERN website. For more information, visit the webpage.
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