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 [...]
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
New Endo-ERN manuscript accepted for publication in European Journal of Endocrinology
We are proud to announce that the manuscript from Work Package 5 “Diagnostics & laboratory analysis” in collaboration with EU COST action, entitled “Peptide Hormone Analysis in Diagnosis and Treatment of Differences of Sex Development: Joint Position Paper of EU COST Action “DSDnet” and European Reference Network on Rare Endocrine Conditions” has been accepted for publication in European Journal of Endocrinology.
To view the publication, click here.
Endo-ERN COVID-19 page
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 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 [...]
