Lots of activities ongoing as we move in to Autumn:

• New webinars added with several re accredited
• Deadline for ERICA GA abstracts approaches
• Last call for registration for the World Orphan Drug Congress 2024

...and more.  Check it all out below.

Enjoy the read!

Endo-ERN team

NEW: EuRREB Participating Centres

There are 117 active centres from 34 different countries currently contributing to European Registries for Rare Endocrine and Bone Conditions (EuRREB) registries.  Check out the comprehensive overview available on the EuRREB website.   

This impressive network continues to grow and the contributions play a crucial role in advancing research and improving patient care.  

REGISTER: Upcoming webinars

Endo-ERN continues to host informative webinars that shares expertise across the network.  Recently, several Endo-ERN webinars have been accredited by the European Accreditation Council on CME (EACCME).  Check out the individual webinar descriptions to see if CME has been granted.  

REGISTER: Upcoming Workshops Patient Rights and Rare Diseases in the European Union

The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks.

NEWS: Joint Action on Integration of ERNs into national healthcare systems (JARDIN) bullet point newsletter 2

The Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN) project has put out their first Bullet Point Newsletter. JARDIN is a huge and complex project that is met with very high expectations from EC and members. Check it out!

CLOSING: Call for abstracts ERICA GA & ERN Research Conference

The 4th ERICA General Assembly & ERN Research Conference will take place from 11-13 December, 2024 in Udine, Italy.  Hosted by MetabERN.

Act now as the deadline for abstracts is approaching on 1 October.  

SYMPOSIUM ADDED: 62nd Annual ESPE Meeting, 16-18 November, Liverpool, UK

The 62nd Annual European Society for Paediatric Endocrinology (ESPE) will take place 16-18 November in Liverpool, England.

The Endo-ERN project office will attend and host a booth and a symposium.  The symposium will take place Sunday, 17 November 1430-1600 in Hall 3.  

REGISTER NOW: World Orphan Drug Congress 2024

Last call to register for The World Orphan Drug Congress Europe. This event is the largest and most established orphan drug & rare disease event worldwide. 

SHARE: MEN patient survey

Endo-ERN member the European MEN Alliance (EMENA), the European patient advocacy organization for multiple endocrine neoplasia (MEN) would like your help disseminating an important survey for MEN patients.

Survey objectives:  This questionnaire invites patients  to share their experiences to identify any unmet needs in diagnosis and treatment, as well as challenges in the ongoing care of MEN syndromes. 

The results of this study will inform what topics our national and international campaigns will highlight with a view to improvement in patient care.  

NEW: HypoNIEWS article about registries

Loren van der Hoeven, MD and PhD candidate at Amsterdam UMC was invited by Endo-ERN ePAG Johan de Graaf of the Dutch Pituitary Foundation to write an article for patients explaining rare disease registries.

Check out this easy-to-understand article and share it with patients that might be interested.