Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by the European Commission. In the coming two years, three different rounds of exchanges will take place between professionals of HealthCare Providers that are member of an ERN. The first round of visits will start in March 2021.
The objective of the ERN Exchange Programme is to palliate disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in a considerable number of diseases to a big number of Healthcare Providers.
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The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant of 2.3 million to establish a structural framework in support of the research activities of the ERNs.
ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and Innovation. This will result in safe, accessible and efficient access of therapies for the benefit of patients suffering from rare diseases and Conditions.
Rare diseases
Rare diseases are defined as diseases that affect not more than 1 person per 2000 in [...]
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The Alstrom Syndrome Global online Conference to be held on the 4th and 5th December.
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On Friday December 18th at 13:00 – 15:00 CET an Endo-ERN webinar is organised with multiple speakers within the main thematic group of “Sex Development & Maturation”
Program:
13:00 Introduction by the chairs Olaf Hiort, Luca Persani, Manuela Brosamle
& Arlene Smyth
13:10-13:20 Olaf Hiort, Lubeck, Germany
German DSD network and quality of care
13:20-13:40 Sasha Howard, Queen Mary University of London, UK
Genetics of delayed puberty: differential architecture of CDGP vs CHH
13:40-13:55 Martine Cools, University of Gent, Belgium
Management of GD in Europe: an update in pediatric care
13:55-14:10 Guy T’Sjoen, [...]
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Glasgow Webinar Series in Rare Conditions: Hypophosphatasia – Diagnosis and Management
Tuesday 8th December 17.00 -18.30 (GMT) 18.00-19.30 (CET)
17:00 Introduction – S. Faisal Ahmed, Glasgow
17:05 A case of infantile HPP – James Irvine, Glasgow
17:15 The aetiology and clinical presentation of HPP – Agnès Linglart, Paris
17:40 The management of HPP across the life span – Anya Rothenbuller, Paris
18:15 Q&A
18.30 Close
The Glasgow Webinar Series is supported by the Glasgow Children’s Hospital Charity and An unrestricted education grant from Alexion.
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On Thursday December 3rd at 17:00 – 18:00 CET an Endo-ERN CMPS webinar about “How to enrol a patient, start a panel and upload files to a panel is organised”
During this webinar you will learn how to create a CPMS panel. We will show you how to enrol a patient, how to start a patient panel and how to upload files to your panel.
After the presentation our operational helpdesk members (Isabel Moenig and Danielle Steenvoorden) will be available to answer your questions during the live Q&A.
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The coordinators of the EU funded S4R project are organising an International Conference on Rare Diseases and COVID-19 where we have been invited to provide a speech on the ERNs and the COVID-19 pandemic on 13th of November at 14:00.
The conference will include virtual meetings with patients and professionals from around the world to know how COVID19 has impacted the community of people affected by rare diseases.
The conference is of free access but you would need to register.
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The Endo-ERN newsletter of October 2020 is out now!
Read more about the ERN Animation clip for patients and health professionals,Endo-ERN webinars, H2020 proposal, e-REC drop-in session and Publications.
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The 17th International Pituitary Congress 2021 will now be a virtual, 4 meeting Congress.
There will be four separate two-hour sessions on February 22 & 24 and March 1 & 3.
Starting Times: 11:00 a.m. EST | 1:00 p.m. BRT | 4:00 p.m. GMT | 5:00 p.m. CET|6:00 p.m. IST & EET | 1:00 a.m. JST | 3:00 a.m. AEDT
Topics will include: • Surgery vs. Medical Therapy for Prolactinomas
• COVID-19 and Pituitary Disease
• Adult Growth Hormone Deficiency
• Oncology and Pituitary Intersections
• Novel Imaging Techniques
• Acromegaly
• Genetics [...]
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On Tuesday November 24th at 17:00 – 18:00 CET an Endo-ERN webinar entitled “Diagnosis and management of Silver–Russell Syndrome, a multidisciplinary care is necessary” will be held by Prof. dr. Irène Netchine (MTG5 co-chair) from Hôpital Trousseau, Sorbonne université, Paris, France
Silver–Russell Syndrome (SRS) is a rare condition associated with prenatal and postnatal growth retardation. Children with SRS can be distinguished from those with « idiopathic » intrauterine growth retardation or born small for gestational age (SGA) and postnatal growth failure by the presence of other characteristic features, including relative macrocephaly at birth, prominent forehead, body asymmetry and feeding [...]
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