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 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

15.10 Break

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 summary

SymposiumRare Diseases Symposium
DateNovember 6th, 2019
LocationLeiden, LUMC

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. Continue reading

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.

This entry was posted in General.

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.

Event summary

EventCPMS upcoming changes
DateOctober 24th, 2019
RegistrationRegistration is closed

Disorders of phosphate imbalance: a dysregulation of the FGF23 endocrine system

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 summary

Eventa dysregulation of the FGF23 endocrine system
DateOctober 8th - October 8th, 2019
LocationPadua
WebsiteVisit event website
RegistrationRegistration is closed

Wolfram syndrome scientific and family meeting in Cardano al Campo (Varese, Italy)

On behalf of the “Associazione Gentian” the “Wolfram Syndrome Italy Association” we cordially invite you to the national scientific and family meeting to be held in Cardano al Campo (Varese, Italy), 21 September 2019. The meeting brings together Italian scientists, families and patients and will be focused on Wolfram syndrome. You will have the unique opportunity to network with colleagues and experts in the field.

Please click here for the program.