New at Endo-ERN website:
A COVID-19 page with information for patients with rare endocrine conditions & for clinicians treating COVID-19 patients with rare endocrine conditions.
Endo-ERN COVID-19 page
Endo-ERN webinar: Update on congenital adrenal hyperplasia
On Monday March 23rd at 14:00 – 15:00 CET an Endo-ERN webinar about “Update on congenital adrenal hyperplasia” is organised.
The webinar will be held by Prof. Dr. med. Nicole Reisch, Ludwig-Maximilian-University Munich, Germany.
Endo-ERN Newsletter February-March 2020
EuRRECa Project Group Meeting Webinar
Following the necessary cancellation of the face-to-face meeting of the EuRRECa Project Group in Verbania, we are pleased to inform you that a Webinar is being arranged as an alternative on the same date.Monday 9 March 2020
The meeting will begin at 10:50 and finish at 13:10 (CET).
The PGB meeting which will be held after the Project Group meeting.
Endo-ERN GA2020 Webinar
Following the necessary cancellation of the face-to-face meeting of the Endo-ERN General Assembly in Verbania, we are pleased to inform that a Webinar is being arranged as a concise alternative for the F2F meeting on the first of the two settled dates: Tuesday 10 march 2020.
We are currently working on the (shortened) definitive programme, which will be announced on Tuesday 3 March.
The meeting will consist of two parts: morning session: 11:00-13.00, and afternoon session: 14.00-15.30/16.00 (CET).
The Steering Committee & Advisory board meeting will be held prior to the General Assembly (9.30-10.30 CET).
LUMC is actively involved in the international approach to rare diseases
How can we help patients with a rare disease in the best possible way? On Tuesday, February 18, the European strategy on rare diseases was discussed during the Rare Disease Day Policy Event with members of the European Parliament in Brussels. The Leiden University Medical Center (LUMC) was represented by. LUMC professor prof. Alberto Pereira as invited speaker, and as coordinator of the European reference network on rare endocrine conditions (Endo-ERN) sharing his experiences and vision for the future.
A person is considered having a rare disease if his or her condition affects less than 1 in 2,000 [...]
Endo-ERN webinar: Prophylactic thyroidectomy in Children with MEN2
On Friday February 21st at 15:30 – 16:30 CET an Endo-ERN webinar about “Prophylactic thyroidectomy in Children with MEN2” is organised.
Multiple Endocrine Neoplasia type 2 is an autosomal dominant inherited tumour syndrome which occurs in 1:200000 live birth and have an estimated prevalence of 1:30 000 to 1:40 000 individuals.
It is caused by mutation of RET protooncogene located on 10q11.2 which encodes a transmembrane receptor tyrosine kinase. RET mutations are also responsible for Hirschprung disease, urogenital abnormalities and other pathologies.All MEN2 patients develop medullary thyroid cancer, half of them pheochromocytoma and 10-20% Primary Hyperparathyroidism. RET mutations have [...]
Endo-ERN Newsletter January
The Endo-ERN Newsletter of January is out now. Read about the upcoming organized webinar, Rare Disease Day, a new patient representative joined MTG 8 Thyroid, FAQ regarding Brexit and an overview of the upcoming events.
The newsletter can be found here.
Rare Disease Day in Dimed – Research Project
29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of (patient) organisations from countries and regions all over the world will hold awareness-raising activities.
In Padova, Italy, a meeting regarding research about rare diseases is organized.
The programme can be found here. MTG 3 Adult chair Pietro Maffei is part of the Scientific Committee.
EJPRD – ERN internal training and support program calls
EJP-RD has opened funding calls for training programs based on two main components: research mobility fellowship and research training workshops.
The aim of these programs is to fill the gap in the available education on rare diseases research by creating and implementing a comprehensive and cohesive program of education and empowerment for different target groups or stakeholders such as researches and young clinicians.
Submission for the fellowship is possible until 16th of March 2020. For the research training workshops, the deadline for submission is 2nd of March.
For more information, visit the website.
