Endo-ERN Newsletter Summer 2018
Newsletter Summer 2018

Please find below the summer newsletter, now with an erratum regarding the first item.

Endo-ERN will have a symposium and stand together with EuRRECa at the European Society of Paediatric Endocrinology Meeting 2018.

Programme Endo-ERN Symposium

  • 9:30 - Alberto Pereira & Olaf Hiort: The concept and scope of Endo-ERN.
  • 9:55 - Johan G. Beun - Patient advocacy: Adrenal
  • 10:05 - Jo Grey - Patient advocacy: Men-1 and pituitary adenomas in childhood
  • 10:25 - Nicole Reish - CAH Transition: Optimisation
  • 10:45 - Faisal Ahmed - European Registries For Rare Endocrine Conditions

European Registries on Rare Endocrine Conditions

"Awareness & Participation In Rare Disease Registries Within The European Reference Network On Rare Endocrine Conditions (Endo-ERN)" will be presented Salma R. Ali at the free communications slot 14, on Saturday 29th of September, 9:00 hrs and EuRRECa will be presented by Faisal Ahmed at the Endo-ERN symposium



Endo-ERN General Assembly 2019

Don't forget to register for the Endo-ERN General Assembly if you have not done so yet! It is important that every HCP is represented, however, only 1 representative per HCP can attend. Exemptions to this rule may apply to those that also fulfil a role in the Steering Committee or in the Advisory Board.


To book a room in the hotel, please find the reservation link in your invitation. More information on the programme will be announced later.



Clinical Patient Management System


In the past few months the number of users of the Clinical Patient Management System (CPMS) has increased greatly and several patients have already been discussed within the system. Every member is encouraged to use the system to enrol patients, discuss patient panels, and schedule meetings within the system. If you need any help, don't hesitate to contact us!


First guideline/consensus papers endorsed by Endo-ERN

Central Hypothyroidism

Read the guideline on the Diagnosis and Management of Central Hypothyroidism, published this year by the European Thyroid Association.


Pseudohypo- parathyroidism

Read the first international consensus statement on the diagnosis and management of pseudohypoparathyroidism and related disorders.




Read the consensus statement on caring for individuals with a difference of sex development (DSD), published earlier this year.



All ERN members are invited to join RD-Connect!

  RD-Connect: an international platform for rare disease data analysis and data sharing

RD-Connect is an international platform for rare disease data analysis and data sharing. The EU-funded integrated platform connects databases, registries, biobanks and clinical bioinformatics for rare disease research. It provides user-friendly tools for data analysis and links different data types – omics (e.g. genomics), clinical information, patient registries and biobanks – into a common resource.


IFCAH Call October 2018

  IFCAH Call October 2018

The international fund Congenital Adrenal Hyperplasia (IFCAH) is opening a call for proposals in October 2018!


3rd International RadboudUMC Adrenal Masterclass

  3rd international RadboudUMC Adrenal Masterclass

The 3rd International RadboudUMC Adrenal Masterclass will take place from January 14th – 18th, 2019, in Amsterdam. You can find the programme here!


Upcoming events