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
General
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 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.
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.
Endo-ERN November & December Newsletter
The Endo-ERN November & December newsletter is out now! Read about the first Endo-ERN Guideline meeting in Leiden, scheduled webinars in 2020 and the Rare Endocrine Registries Workshop in Glasgow.
Lecture by Prof. Thomas Danne in January 2020
We are very pleased to invite you for the lecture of Professor Thomas Danne on Wednesday, 15 January 2020 at the LUMC, The Netherlands.
The theme of lecture is Time in range, its use and implication in the treatment of (children with) type 1 diabetes.
The duration will be 1 hour and accreditation has been requested for 1 point. The lecture is open and free for everyone who is interested in this subject.
Click here for the invitation.
EJP RD Internal Call for Proposals 2019 & Joint Transnational Call 2020 (JTC2020)
Two Preliminary Announcements from EJPRD:
The Clinical Trials Methodology Demonstration Projects Call is now open. It aims to show the usability and capability of the innovative statistical methodologies for clinical trials in rare diseases, which have not been demonstrated on existing data for specific rare disease clinical trials yet. For more information about this call, visit the website.
Call for Proposals 2020 of the EJP RD JTC2020 is online! Topic is: Pre-clinical research to develop effective therapies for rare diseases. There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals. The call [...]
Endo-ERN October Newsletter
The Endo-ERN October newsletter is out now! Read about the Endo-ERN webinar Alström Syndrome on 25 November, 5 new Affiliated Partners joined Endo-ERN, upcoming events and much more!
Rare Diseases Symposium: Cross-border research in rare diseases
European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Cross-border research was the central topic of the annual Rare Diseases Symposium on November 6th in the LUMC
During the symposium, both internal and external attendees were given an update on international developments within the field of rare diseases. Prof. Alberto Pereira gave an introduction on research within the European Reference Networks (ERNs) and the European Joint Programme on Rare Diseases (EJP RD). The EJP RD actions are organized [...]
Newsletter September 2019
Read the September edition of the Endo-ERN newsletter now! The Launch of the call for members to join existing 24 ERNs has opened, Endo-ERN was present at ESPE2019 and much more.
Click here for the newsletter.
