Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings! Pokračovat ve čtení
Endo-ERN webinar: Understanding Lipodystrophy
On Wednesday July 8th 15:00 – 16:00 CET an Endo-ERN webinar about „Understanding Lipodystrophy“ is organised.
The webinar will be held by Prof Giovanni Ceccarini from Azienda Ospedaliera Universitaria Pisana in Italy and Dr. Rebecca Sanders, patient representive of Lipodystrophy UK & representative of European patients inside the Registry Board of ECLip.
Lipodystrophy syndromes are a group of rare (estimated prevalence of 3/1.000.000 if excluding HIV-related forms) and heterogeneous disorders characterized by the complete or partial loss of adipose tissue, in the absence of a nutritional deprivation or a catabolic state.
Lipodystrophy syndromes are usually associated with the development of metabolic syndrome, caused by the abnormal deposition of fat that cannot be stored in appropriate subcutaneous depots. In this event, surplus calories can only be stored as ectopic fat in liver, muscle tissue and other internal organs resulting in insulin resistance, diabetes mellitus, hypertriglyceridemia, and hepatic steatosis or steatohepatitis. Other features include, but are not restricted to, muscle pseudo-hypertrophy, polycystic ovary syndrome, cardiopathies, chronic pain and, overall, in many cases, a marked reduction of the quality of life.
Loss of adipose tissue also results in a decrease of serum leptin levels that interferes with hunger-satiety signals, leading to hyperphagia, aggravating the metabolic alterations ad thus sustaining a vicious cycle.
Recognition of lipodystrophy is based on clinical history, physical and instrumental examination. Because Lipodystrophies are rare and heterogeneous, frequently the disease is unrecognized or misdiagnosed. This is unfortunately a common experience for many patients who become frustrated by not being able to give a unifying explanation to their constellation of symptoms and disorders.
Webinar shrnutí
Webinar Endo-ERN webinar: Understanding Lipodystrophy Datum 8 července 2020 Registrace Registrovat na tuto webinar
Endo-ERN webinar: Genetic Obesity Disorders caused by Leptin-melanocortin Pathway Defects
On Tuesday July 7th at 18:00 – 19:00 CET an Endo-ERN webinar about “Genetic Obesity Disorders caused by Leptin-melanocortin Pathway Defects” is organised.
The webinar will be held by Dr. Erica van den Akker from Erasmus MC: University Medical Center Rotterdam in the Netherlands.
Webinar shrnutí
| Webinar | Endo-ERN webinar: Genetic Obesity Disorders caused by Leptin-melanocortin Pathway Defects |
| Datum | 7 července 2020 |
| Registrace | Registrovat na tuto webinar |
Rare diseases: how the European Reference Networks support health professionals
The video from the EU Commission’s DG Health & Food Safety (SANTE) with Endo-ERN Coordinator prof. Alberto Pereira, prof. Franz Schaefer (ERKNET), prof. Marta Mosca (ReCONNECT) & prof. Jean-Yves Blay (EURACAN) is illustrating what the activities and the added value of the European Reference Networks are, particularly from the health professionals’ point of view.
The video is available HERE
Endo-ERN webinar: Update on the consensus on congenital hypothyroidism: a patient centered approach
On Wednesday July 1st at 17:00 – 18:00 CET an Endo-ERN webinar about “Update on the consensus on congenital hypothyroidism: a patient centered approach” is organised.
The webinar will be held by Prof. Dr. Michel Polak, Paediatric Chair of the MTG ‘Thyroid’ from Hôpital Universitaire Necker – Enfants malades.
Webinar shrnutí
| Webinar | Endo-ERN webinar: Update on the consensus on congenital hypothyroidism: a patient centered approach |
| Datum | 1 července 2020 |
| Registrace | Registrovat na tuto webinar |
Webinar series: COVID-19 and Intensive Care Medicine, 2 June 2020 at 17:00 CET
In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE is organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat patients with COVID-19.
The next webinar will be held by Prof. Maurizio Cecconi, President Elect of the European Society of Intensive Care Medicine and Head of Department Anaesthesia and Intensive Care Units, Humanitas Research Hospital, Lombardy in Italy, and by Prof. Jozef Kesecioglu, President of the European Society of Intensive Care Medicine, expert on ethics and intensive care, Head of Intensive Care Centre of the University Medical Centre of Utrecht in The Netherlands. Attendees will then be able to ask questions to the speakers. The webinar will be recorded and available for off line vision afterwards.
To join the webinar, click here
Programme:
| Agenda: | |
| 17.00 – 17.05
17.05 – 17.25
17.25 – 17.45
17.45 – 18.00 |
Prof. Jozef Kesecioglu – President of the European Society of Intensive Care Medicine; Expert on ethics and intensive care, Head of Intensive Care Centre of the University Medical Centre of Utrecht, Netherlands
|
Recorded Webinar: COVID-19 & Endocrine conditions with increased risk – Endo-ERN
On May 12th 2020, a successful Endo-ERN webinar about COVID-19 & Endocrine conditions with increased risk was organized. The webinar was chaired by coordinator of Endo-ERN Prof. Alberto Pereira, Prof. Eelco de Koning, both from Leiden University Medical Center in the Netherlands and by Prof. Wiebke Arlt from University of Birmingham in the UK.
The recording of this webinar and presentations are published on the website of the European Commission. View the recording and presentations here.
For an overview of all previously organized & upcoming scheduled Endo-ERN webinars, click here.
CPMS Newsletter May 2020
Webinar: COVID-19: Endocrine conditions with increased risk – Endo-ERN
In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE is organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat patients with COVID-19.
Feel free to forward this invitation to any other colleague that might be interested in the topic.
We would like to invite you to the webinar that will take place on:
Tuesday 12 May at 18.00 CET
6th Webinar: ‘COVID-19: Endocrine conditions with increased risk – Endo-ERN’
The webinar will be held by Prof. Alberto Pereira, Coordinator of Endo-ERN, from Leiden University Medical Center in the Netherlands, by Prof. Eelco de Koning from Leiden University Medical Center in the Netherlands and by Prof. Wiebke Arlt from University of Birmingham in the UK.
Attendees will then be able to ask questions to the speakers.
Given the high number of participants, we would like to kindly ask you to consider downloading the app (linked below) or to use computers combined with phone conference systems. Please, if possible avoid using landlines. Attached you will find a brief explanation on how to access the Webinar.
Agenda:
18:00 – 18:05 Welcome DG SANTE, European Commission
18:05 – 18:10 Introduction and overall view
Prof. Alberto Pereira (Leiden University Medical Center – Coordinator of Endo-ERN)
18:10 – 18:25 Type of diabetes and risk for COVID-19
Prof. Eelco de Koning (Leiden University Medical Center)
18:25 – 18:35 Q&A
18:35 – 18:50 COVID-19 and the Management of Adrenal insufficiency
Prof. Wiebke Arlt (University of Birmingham)
18:50 – 19:00 Q&A
Event shrnutí
| Event | Webinar: COVID-19: Endocrine conditions with increased risk – Endo-ERN |
| Datum | 12 května 2020 |
| Registrace | Registrovat na tuto event |
| Ke stažení |
ESE and Endo-ERN launch an initiative to collect data on patients with rare endocrine conditions and COVID-19
The ESE Rare Disease Committee, alongside Endo-ERN, have engaged in an initiative to collect data concerning specific groups of patients with rare endocrine conditions, who are also affected by COVID-19. We believe this is a global unmet need and requires swift, concerted and coordinated action.
The European Registries for Rare Endocrine Conditions (EuRRECa) project, supported by both Endo-ERN and ESE, has developed an e-reporting tool (e-REC) which has been fully operational for over a year within a robust governance and ethical framework and which does not require individual patient consent. The platform is now open to all centres across the world to report a new confirmed or suspected case of COVID-19 in a patient with an existing endocrine or metabolic bone condition.
We would like to encourage you to join us in this important initiative by registering on the e-REC platform and begin submitting data. If you would like to use the e-REC platform to report a new COVID-19 infection in a patient with an existing condition, please visit the e-REC platform and create an account.
If you are already an active user of e-REC, then, after login, you will need to revise your reporting set up.
You can find out more about the functionality of e-REC in this recent report. If you need any assistance, please email the EuRRECa team at info@eurreca.net.
ECRD 2020 Online 14-15 May
In the context of the current COVID-19 pandemic, the upcoming European Conference on Rare Diseases & Orphan Products (ECRD) will take place ONLINE on 14-15 May.
The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.
The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it. See the full ECRD programme built around the six parallel themes.
Register via this link. Deadline for registration is May 1st.