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! Continuar leyendo
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 within major pillars: collaborative research funding, coordinated access to data & services, capacity building & empowerment, and accelerating translation of research & therapy development.
Specific aspects of EJP RD were discussed in more detail: disease registries (prof. Faisal Ahmed), financing opportunities (dr. Sonja van Weely, ZonMw), and the EJP RD virtual platform (dr. Marco Roos). That successful international collaboration can significantly improve healthcare was nicely illustrated by prof. Maarten Vermeer. He shared his experiences with European and worldwide research within the field of Cutaneous Lymphoma.
Johan de Graaf also shared his experiences with cross-border research, from a patient-representative point of view. For each ERN disease grouping, there is a European Patient Advocacy Group (ePAG). Johan is ePAG for Endo-ERN and involved in several international rare disease initiatives. The symposium was concluded with an overview of EU research grant opportunities (dr. Pieter de Koning).
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.
14.00 Opening Prof. Willy Spaan
14.10 ERN Research and EJP-RD Prof. Alberto Pereira
14.30 Disease Registries – Strength In Numbers Prof. Faisal Ahmed
14.50 International studies in cutaneous T-cell lymphoma Prof. Maarten Vermeer
15.30 Financing opportunities in EJP-RD Sonja van Weely, PhD (ZonMw)
15.50 Virtual data platform Marco Roos, PhD
16.10 Patient representation in a European context Johan de Graaf, patient representative Endo-ERN
16.30 EU Research grants Pieter de Koning, PhD
|Symposium||Rare Diseases Symposium|
|Fecha||6 noviembre 2019|
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.
|Event||Endo-ERN webinar: Alström Syndrome|
|Fecha||25 noviembre - 25 noviembre 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.
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.
On the 24th of October, a CPMS Webinar will be held at 14:00 CET
The topic of the Webinar is CPMS upcoming changes.
|Event||CPMS Webinar: CPMS upcoming changes|
|Fecha||24 octubre 2019|
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.
The first call for new members to join existing 24 ERNs is now open until 30 November 2019.
For more information how to apply and join Endo-ERN click here
The National Coordinators of EndoERN, BondERN and ERKnet strongly aimed for this multidisciplinary meeting which brings together national and international experts on hypophosphatemia XLH to discuss its management and for its greater dissemination.
|Event||Disorders of phosphate imbalance: a dysregulation of the FGF23 endocrine system|
|Fecha||8 octubre - 8 octubre 2019|
|Sitio web||Visitar event sitio web|
The July & August-edition of the Endo-ERN newsletter is out now! The call for new members to join the ERN will launch soon, 11 new Affiliated Partners joined the European Reference Network, information about the upcoming events and much more!
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