SUPPORT NOW: EURORDIS Open Letter to the European Commission

EURORDIS has created an Open Letter to the European Commission outlining crucial steps for rare disease to be taken following next month’s European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives. Find the letter here and consider signing individually and/or as a representative of your instituition.

 

Deadline for signature Monday, 3 June, 2024.

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TUESDAY: Attend Endo-ERN Symposia at the ECE

Are you attending the European Society of Endocrinology (ECE) in Stockholm, Sweden? You are invited to the Endo-ERN Symposium on Tuesday, 14 May from 12:00-13:30. Check out the agenda below:

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Endo-ERN introduction, Prof. Alberto Pereira, Amsterdam University Medical Center, the Netherlands & Endo-ERN Coordinator

1210

Guidelines on familial hyperaldosteronism, Prof. Olaf Dekkers, Leiden University Medical Center, the Netherlands and Prof. Paolo Mulatero, University of Torino, Italy

1240

SDHB and SDHD guidelines, Prof. David Taieb, Aix Marseille University, France

1305

Pituitary tumors: Looking for patients reported outcomes not yet managed, Dr. Elena Valassi, Universitat Internacional de Catalunya, Barcelona, Spain.

 [...]

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BUY NOW: Handbook of ENDOCRINOLOGY and METABOLISM

The first European endocrinology textbook developed by the members of European Reference Network on Rare Endocrine Conditions (Endo-ERN).

Discover this extensive illustrated textbook of endocrinology created primarily for students and residents. Written by experts of the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the Handbook of ENDOCRINOLOGY and METABOLISM describes commonly managed conditions, as well as providing information about exceptional rare endocrine conditions.

Topics covered include common conditions of the endocrine system, metabolic disorders, inherited conditions, and endocrine emergencies. With clinical application in mind, the chapters include illustrations and tables, as well as the latest information about [...]

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NOW OPEN: Clinical Exchange Programme call for applications

The first call for applications for the Endo-ERN Clincial Exchange Programme is now open! Early application is encouraged with the call closing on July 1, 2024.

The ERN Clinical Exchange Programme has been designed to share knowledge, strengthen the clinical capacities across the network and to stimulate collaboration between healthcare professionals in European Reference Networks (ERNs) and beyond. The mission of Endo-ERN is to reduce present inequalities in rare disease care for patients with rare endocrine conditions.

Find out about the criteria and apply now.

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Read more: Successful Endo-ERN General Assembly 2024

The 8th Endo-ERN was hosted in Milan by Luca Persani of Endo-ERN healthcare provider (HCP) member Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy. Held April 23-24, the Endo-ERN GA was attended by nearly 150 people from 89 different HCP members and ePAGs. The event featured 15 plenary sessions with topics such as:

New grant period 2024-2027 Roadmap to Copenhagen & Transition ERDERA Landmark Integration Project JARDIN Landmark Integration Project Patient journeys European medicine shortages: How can we avoid a disaster for patients with rare conditions?

 

There were updates from all 9 Endo-ERN work [...]

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REGISTER NOW: World Orphan Drug Congress 2024

Endo-ERN is delighted to be a partner of The World Orphan Drug Congress Europe. This event is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.

With this partnership we are delighted to inform you that Endo-ERN members are eligible for a free VIP pass. You can apply now: http://www.terrapinn.com/WODC/ENDO-ERN

Date & Location

22 October 2024 | Pre-Congress Workshops [...]

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Register ECE 2024 – rare endocrine conditions symposium

ECE 2024 will take place 11-14 May in Stockholm, Sweden. Registration is now open! The Endo-ERN project office will attend and host a booth and a symposium.

The Endo-ERN Symposium is now confirmed:

Tuesday, 14 May from 12:00-13:30

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Endo-ERN introduction, Prof. Alberto Pereira, Amsterdam University Medical Center, the Netherlands & Endo-ERN Coordinator

1210

Guidelines on familial hyperaldosteronism, Prof. Olaf Dekkers, Leiden University Medical Center, the Netherlands and Prof. Paolo Mulatero, University of Torino, Italy

1240

SDHB and SDHD guidelines, Prof. David Taieb, Aix Marseille University, France

1305

Pituitary tumors: Looking for patients reported outcomes not [...]

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