Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to a better future for people living with a rare disease in Europe.
Endo-ERN will be present at The European Congress of Endocrinology (ECE) 2019. Endo-ERN will host a Lunch Hub session: “ESE and Endo-ERN bridging education and virtual patient consultation for rare endocrine conditions throughout Europe” and will be present at an exhibition stand together with EuRRECa.
Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings!
On the 12th of March, 2019, the 3rd Endo-ERN General Assembly took place in Budapest, Hungary. More than 100 members, including member reference centres, patient representatives, national coordinators, representatives of ESPE and ESE, and affiliated partners, participated in the meeting that lasted from 10:45 to 16:30.
On the 28th of February Lars Rejnmark presented the first EndoRARE Webinar: HYPOPARATHYROIDISM in adults, diagnosis and therapeutic challenges.
Read the January edition of the Endo-ERN newsletter now! We announce our presence at ECE2019, report on multiple meetings such as an ePAG meeting and an MTG8: Thyroid meeting, and relay new information about affiliated partners from the EU Commission.
From 1-3 February, 2019 our Endo-ERN ePAGs met in Leiden, The Netherlands to discuss the patient involvement and plans in the Endo-ERN activities. Eight (of 14) ePAGs were present and one joined remotely.
Members of the Main Thematic Group (MTG) 8: Thyroid met in Paris, at Necker Enfants Malades University Hospital, on the 23rd of January 2019 to discuss the ongoing work and progress of the MTG and it’s subgroups. Chair of MTG8, Michel Polak, wrote a short report about the meeting.
On the 30th of January the second ERN Symposium took place in the Leiden University Medical Center (LUMC) in Leiden, The Netherlands.
Per February 1st 2018, our adult chair of the Main Thematic Group of Pituitary, Nienke Biermasz, was appointed as professor of Medicine at the LUMC/Leyden University. This Friday the 18th of January, 2019 the official ceremony will take place where she will officially accept her new position, by giving her inaugural lecture in Leiden (Academy building Leiden University).
