The Endo-ERN newsletter of December 2020 is out now!
Read more about upcoming Endo-ERN webinars, Special supplemental issue on Rare Endocrine Conditions, EJP RD Research Training Workshops for ERN members and much more.
In September 2020 the EJP RD launched its second call of the “European Reference Networks (ERNs) Training and support program” as part of the ‘Training and Empowerment’ activities that aim to fill the gap in education on rare diseases research.
The “Research Training Workshop” call is aimed at identifying workshop topics to train ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. Selected applicants will receive financial support for the organization of a 2-days workshop for 20 participants.
Training themes include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, [...]
The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7, 2020. The call is open to EJP RD beneficiaries and their linked third parties.
The innovation methodologies topics particularly include (but are not limited to):
· Development of a disease progression model from a natural history cohort or other observational studies.
· Development and validation of a disease specific clinically meaningful outcome with special interest in PCOMs, or composite endpoints.
· Development of a design and analysis procedure for a pharmacometric model and/or bridging study.
· Development of a randomization-based [...]
The Endo-ERN newsletter November 2020 is out now!
Read more about the upcoming & recording Endo-ERN webinars, New MTG8 chairs, Launch of Exchange Programme for healthcare professionals in European Reference Networks, The ERICA Project and much more.
The newsletter can be found here.
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.
[...]
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 [...]
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.
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
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.
