The Pillar 2 of the EJP RD has organized its first Annual Retreat which took place at the Istituto Superiore de Sanità (ISS) in Rome (Italy) from 22nd to 24th of May 2019.
EJP RD Pillar 2 annual retreat
General
The first patient meeting for Eastern European countries on thyroid diseases
On May 10th and 11th, The Bulgarian organisation VIOM (a patient organisation for thyroid diseases) organised the first patient meeting for Central/South-Eastern European countries on thyroid diseases, at the same time as the First Scientific Conference for Central and Eastern Europe on the Thyroid Diseases.
April Newsletter
Read the April edition of the Endo-ERN newsletter now! We have new CPMS standard operating procedures, a new MTG1: Adrenal chair, and we announce the date and location of the General Assembly 2020!
Rare2030
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 at ECE2019
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.
February-March Newsletter
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!
General Assembly 2019 report
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.
First EndoRARE Webinar: HYPOPARATHYROIDISM in adults
On the 28th of February Lars Rejnmark presented the first EndoRARE Webinar: HYPOPARATHYROIDISM in adults, diagnosis and therapeutic challenges.
January Newsletter
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.
ePAG meeting Leiden
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.
