APPOINTED: Diana Kwast-Hoekstra joins the IRDiRC Therapies Scientific Committee

Endo-ERN ePAG Diana Kwast-Hoekstra was recently appointed to the Therapies Scientific Committee of the International Rare Disease Research Consortium (IRDiRC).

With my nomination and involvement I will be happy to take my acquired knowledge and experiences as a nurse scientist and ePAG at European level and bring it to the attention of the other members of the TSC, in order to achieve the goals of the IRDiRC as much as possible. In my opinion, knowledge and experiences know no boundaries and should always be used to improve care for people with rare conditions.”

The IRDiRC teams up with [...]

Continue reading

This entry was posted in General.

RESOURCE: IRDiRC Drug Repurposing Guidebook

Drug shortages and drug repurposing are hot topics in the rare disease community as highlighted by Endo-ERN ePAG Joahn de Graaf at the Endo-ERN symposium at EPSE in September..

New IRDiRC board member Diana Kwast kindly shared this resource that might of interest the the wider rare endocrine disease community.

The commentary IRDiRC Drug Repurposing Guidebook: making better use of existing drugs to tackle rare diseases has been published in Nature Reviews Drug Discovery.

This guidebook, authored by the IRDiRC Task Force “Drug Repurposing Guidebook” facilitates drug repurposing for [...]

Continue reading

This entry was posted in General.

IMPACT: Endocrine Connections Special Collection with Endo-ERN

Endo-ERN has partnered with Endocrine Connections to support the collaborative research efforts of our members in the network. In the last 18 months that has resulted in the publication of 19 articles.

These articles are of interest with an average of 690 downloads and 1378 pageviews. An impressive 13 of the publications have been cited with no doubt more to come.

Download NOTE: no file found

the most up-to-date impact summary to find out more.

 

Continue reading

This entry was posted in General.

SAVE THE DATES: CPMS Panel Meetings

To help Endo-ERN members plan more effectively, recurring meetings have been set for some of the MTGs. see our manual
HERE NOTE: no file found

MTG experts will receive an invite directly. If you do not please contact the CPMS helpdesk.

MTG1: Every 2 months, 1st Thursday @1500

Thursday 7 Sep @15:00

Click for more info NOTE: no file found

 

MTG2: Every month, 2nd Monday @13:00

Monday 11 Sep @13:00

Click for more info NOTE: no file found

 

MTG3: Every [...]

Continue reading

This entry was posted in General.

CONTRIBUTE: Rare Barometer Newborn Screening

The new Rare Barometer survey on newborn screening for rare diseases is now live!

It should take no more than 20 minutes to complete and closes on July 23, 2023.

Through asking questions on the possible benefits and disadvantages of screening newborns for rare diseases, for example in terms of anxiety, access to care or adjustments to family life, we will make sure that your opinion is taken into account when shaping the future of newborn screening.

This survey is open to people living with a rare disease and their family members from any country in the world. It [...]

Continue reading

This entry was posted in General.

OPPORTUNITY: Post-doc position at IRCCS Istituto Auxologico Italiano

Two exciting opportunities are available at one of Endo-ERN’s reference centres!

Both positions are available at the laboratory of Prof. Luca Persani at Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico (Milan, Italy) to work in the field of congenital thyroid disorders.

You will find a detailed job description and application instructions here: APPLY NOW (, 339 KB)

 

 

Continue reading

This entry was posted in General.

CONTRIBUTE: Survey exploring testosterone methodology

You are kindly invited to participate in a survey exploring testosterone methodology in clinical units and laboratories throughout Europe. Endo-ERN members UZ Leuven and Ghent University Hospital are managing the survey.

Currently, different methods are used to measure testosterone and SHBG, hampering harmonized clinical use of (free) testosterone. With this survey, we want to map current clinical practices on methods to measure testosterone and SHBG in clinical units and laboratories in Europe.

The results of this survey will be used to propose harmonization efforts for testosterone and SHBG measurements.

Access the [...]

Continue reading

This entry was posted in General.

ERN Clinical Exchange Programme: Amsterdam to Basel

Inspiration and innovation were the driving forces behind Dr Dirk Jan Stenvers application to the ERN Exchange Programme.

Dr Stenvers, a clinical endocrinologist at Amsterdam UMC, had his interest piqued by recent publications and congress presentations by the Endocrinology team at University Hospital Basel, Switzerland. Development of copeptin-based diagnostic tests for arginin vasopressin deficiency (previously known as diabetes insipidus) is just one example of innovations that the UHB team are working on. Copeptin based tests are a welcome alternative to the water deprivation test which is a challenging experience for most patients.

Over the course of 4 days, exchange host [...]

Continue reading

This entry was posted in General.

ERICA SURVEY: ERNs Clinical Research

This survey aims to collect information on the status quo on ERNs and Clinical Research.
It is developed by ERICA WP4 Clinical Trial Support on the basis of the previous survey delivered in 2018.
The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs and clinical research.

The survey is addressed both to ERN Coordinators and their ERN HCP members.

Please fill in the survey here: https://ec.europa.eu/eusurvey/runner/ERICAsurvey

The survey will be open until 15th June.

Continue reading

This entry was posted in General.