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 October 2019
Rare Diseases Symposium
Cross-border research: opportunities and experiences
European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Are you curious about the opportunities for European research into rare diseases? Then come and visit the Rare Diseases Symposium on Wednesday November 6th at the LUMC main building in lecture hall 5. Endo-ERN Coordinator Alberto Pereira will be one of the speakers, together with Faisal Ahmed and ePAG representative Johan de Graaf.
Registration is not required, joining the symposium is free of charge.
Program
14.00 Opening [...]
Endo-ERN webinar: Alström Syndrome
On Monday 25 November 2019 at 15:00 – 16:00 CET an Endo-ERN webinar about “Alström Syndrome” is organised. The webinar will be held by Pietro Maffei MD,PhD, Padua University Hospital, Italy and Marina Valenti, mother of a patient and member of Associazione Italiana Sindrome di Älstrom . Pietro will be talking about: Endocrine and Metabolic issues in Alström Syndrome. Furthermore, Marina will be sharing the family view: Coping with Social, Educational and Medical obstacles AS presents.
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.
Endo-ERN website now available in Polish
We proudly announce that our Endo-ERN website is now available in Polish. This way, we hope to reach more patients, caretakers, medical specialists etc. closely involved in the field of rare endocrine conditions, all over Europe, all over the world.
CPMS Webinar: CPMS upcoming changes
On the 24th of October, a CPMS Webinar will be held at 14:00 CET
The topic of the Webinar is CPMS upcoming changes.
Webinar “New therapeutic targets for the treatment of pancreatic neuroendocrine” – cancelled
Due to unforeseen circumstances we will need to cancel the Webinar “New therapeutic targets for the treatment of pancreatic neuroendocrine tumours”, that was scheduled on October 10th at 16:00-17:00 CET. A new date will be announced as soon as possible.
