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.
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.
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 [...]
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 [...]
The 8th International Symposium on DSD will take place from 8 – 10 July 2021 at the University Hospital Bern.
The registration and abstract site will open on 21st January 2021.
We are proud to announce that the manuscript entitled
ENDOCRINOLOGY IN THE TIME OF COVID-19: Clinical management of neuroendocrine neoplasms (NENs), which involves various Endo-ERN members, has been accepted for publication in the European Journal of Endocrinology.
To view the publication, click here
On Wednesday November 11th at 15:00 – 16:00 CET an Endo-ERN webinar about “Wolfram syndrome: Diagnostics, Biomarkers, and Therapeutic Options” is organised. The Endo-ERN webinar will be held by Prof Fumihiko Urano from the Washington University, United States.
The video explains to patients affected by rare, low prevalence and complex diseases what the European Reference Networks (ERN) are and how they might support them to identify diagnosis or treatment, in the case their health professional considers the support of the ERNs is necessary.
Click here to view the video with subtitles in all EU languages and Norwegian.
The Endo-ERN newsletter of September 2020 is out now! Read more about planned medical treatment abroad, Endo-ERN webinars, EJP RD calls and upcoming virtual events.
Research Training Workshop Call has been extended until the 12th October 2020.
The goal of the workshops is to train researchers and clinicians affiliated to ERNs on innovative themes related to rare diseases research. Training themes must have a cross-ERN added value and may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc.
Topics can be proposed by clinicians/investigators affiliated to an EJP RD beneficiary institution, an ERN- Full Member or an ERN-Affiliated Partner institution
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