Endo-ERN Newsletter November - December 2019 ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­
November - December 2019
happy holidays 2019

Webinar page available on Endo-ERN website

We are proud to announce that from now on, a webinar page is available on our website, on which the past and upcoming webinars are displayed. Recordings of these past webinars can be viewed here, as well as registering for upcoming webinars.

On Tuesday January 28th 2020 at 14:00 - 15:00 CET an Endo-ERN webinar about "Turner Syndrome Guideline & the patient perspective" is organized.

On Friday February 14th 2020 at 15:00 – 16:00 CET an Endo-ERN webinar about "Prophylactic thyroidectomy in Children with MEN2 is organized.

Prophylactic thyroidectomy in children diagnosed with MEN2 is a recommended treatment and in this webinar Prof. Tom Kurzawinski will talk about timing of surgery as well as its outcomes.

Register for these webinars.

Thomas-Danne

Lecture by Prof. Thomas Danne at LUMC in January 2020

We are very pleased to invite you for the lecture of Professor Thomas Danne on Wednesday, 15 January 2020 at the LUMC in Leiden, The Netherlands.

The theme of the lecture is Time in range, its use and implication in the treatment of (children with) type 1 diabetes.

The duration will be 1 hour and accreditation
has been requested for 1 point. The lecture is open and free for everyone who is interested in this subject.

EJP RD Internal Call for Proposals 2019 & Joint Transnational Call 2020 (JTC2020)

EJPRD

Two Preliminary Announcements from EJPRD:

The Clinical Trials Methodology Demonstration Projects Call is now open. It aims to show the usability and capability of the innovative statistical methodologies for clinical trials in rare diseases, which have not been demonstrated on existing data for specific rare disease clinical trials yet. For more information about this call, visit the website.

Call for Proposals 2020 of the EJP RD JTC2020 is online! Topic is: Pre-clinical research to develop effective therapies for rare diseases. There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.

CAPITAL IV in Leiden, The Netherlands

weblogo CAPITAL

The 4th Care for Pituitary Adenoma Leiden (CAPITAL) workshop for pituitary tumour specialists will take place on June 4-5, 2020, in Leiden, the Netherlands. CAPITAL IV is a workshop, not a conference. Capital IV stimulates interaction, discussion, case presentations, and ask you to challenge the current standard of care. This inspiring interaction between faculty and participants and the shared fascination for high standard pituitary care are the main drivers of the success of our workshop.

Deadline for early bird registration is the 1st of March 2020.

Register for this event

foto Endo-ERN guideline

First Endo-ERN Guideline meeting in Leiden

On 9-10 December 2019, the first Endo-ERN Guideline meeting was organized, about the clinical practice guideline on pubertal induction in males and females with gonadal or pituitary deficiency and sex hormone replacement in transition and young adults.

Several topics of the clinical practice guideline were discussed and the next meeting is scheduled to be held in Stockholm.

Endo-ERN webinar Alström Syndrome

Endo-ERN Alstrom Webinar

On Monday, 25 November 2019, the third Endo-ERN webinar was organized by MTG3 co-chairs Pietro Maffei MD, PHD, Padua University Hospital and Marina Valenti, mother of a patient and member of Associazone Italiana Sindrome di Alström. Dr. Maffei provided an overview of the Endocrine and Metabolic issues in Alström Syndrome. ePAG Marina Valenti, shared the family view: Coping with Social, Educational and Medical obstacles AS presents. 21 persons attended the webinar and some interesting questions were asked. Interested in learning more about the Alström Syndrome? The webinar was recorded and can be viewed here.

Rare Endocrine Registries Workshop in Glasgow

Rare Endocrine Registries Workshop Dec 2019 (003)

The Office for Rare Conditions, Glasgow organised a workshop on ‘Registries for Rare Endocrine Conditions’ on 12-13th December 2019. About 70 registered participants from across the world had the opportunity to learn about the EuRRECa project as well as the general value of rare disease registries for informing patient care, research and health technology assessment and regulation.

Participants also had an opportunity to share their own experience of existing as well as emerging registries in the field of endocrinology. The workshop was supported by the Office for Rare Conditions, the University of Glasgow and an unrestricted education grant from Novo Nordisk. Presentations are available to download here.

The next Rare Endocrine Registries Workshop is organized at 11 December 2020 in Leiden.

rare diseases symposium

Rare Diseases Symposium in Leiden

European cooperation is of great importance in tackling rare diseases. Collaborative research projects offer opportunities for care improvement for patients with a rare disease. Cross-border research was the central topic of the annual Rare Diseases Symposium on 6 November 2019 in the LUMC.

For a short summary about the Rare Diseases Symposium, click here

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ERN coordinators meeting in Brussels

The Coordinators of the 24 ERNs and the European Commission met for three days in Brussels, from the 13-15 November, to address several aspects related to the consolidation of their networks, the expansion of their geographical coverage and areas of intervention, and deepening of several areas of action.

Discussions were around the expansion of the Networks, areas of competences and actions and the results from a survey conducted amongst ERN members by the European Joint Programme on rare diseases.

CPMS update

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The number of active and monthly CPMS users is continuously. Number of MDT panels has increased the last months.

If you have any questions regarding the CPMS, please email CPMSHelpdesk@Endo.ern.net.eu

Upcoming events