Diana Kwast-Hoekstra of the Dutch Pituitary Foundation participated in the Eurordis: Rare Disease Week in Brussels. Diana is an Endo-ERN ePAG representative for MTG1.

While in Brussels, Diana and other patient representatives had the opportunity to raise awareness of rare disease in meetings with key MEPs and other policy-makers.

The delegation had Five Asks:

Advancing the development of orphan medicines Improving disability assessments Acting on mental health needs Optimising the European Health Data Space Launching a European Action Plan for Rare Diseases

Thank you Diana and Eurordis for keeping rare disease at the top of the European health agenda!

Continue reading →

The work of Endo-ERN’s ePAGs took them across the Atlantic recently as they attended the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) meeting in Orlando, FL, USA. Attendees were treated to an international panel that covered topics such as:

Treatment challenges in various countries Role of patient support organizations Inclusion of Hormones as Essential Medicines (EML) Strategies for success Patient adherence Best practice for social media and medicine

Johan de Graaf of the Dutch Pituitary Foundation, and an ePAG for MTG6, gave a presentation Historical Review of Experiences in Merging Patient and Medical Groups that was very well received.

 [...]

Continue reading →

Endo-ERN in partnership with Endocrine Connections has created a Supplemental for Rare Disease Day 2023.

Available online, and as a shareable document, this special collection is overseen by the Editor-in-Chief, Adrian Clark and our network’s guest editors George Mastorakos (National and Kapodistrian University of Athens), Violeta Iotova (Medical University of Varna), and Jérôme Bertherat (Hopital Cochin).

Click here for the Endocrine Connections Supplemental Rare Disease Day 2023. Please share with your colleagues with an interest in rare disease within the network and beyond.

 

Continue reading →

Congratulations to Endo-ERN Network Coordinator Professor Alberto Pereira Arias for his inspiring Inaugural Lecture held last month.

The topic 2034 considered the possibilities for rare disease care during the next decade at Amsterdam UMC and beyond.

As the coordinator of two important projects that will change the rare disease landscape in Europe – Endo-ERN & ERICA – the lecture was a welcome opportunity to glimpse the future that will be the work of the next decade.

Watch the recording here.

Continue reading →

Rare Disease Day (February 28) is the perfect opportunity to remind your colleagues about your involvement with Endo-ERN.

We created an A3 poster that you can print and display in your department and/or around your hospital to raise awareness of rare disease and your involvement with Endo-ERN.

Download here (, 496 KB)

 

 

Continue reading →

At a two-day conference (Dec 1-2, 2022) on clinical research networks (CRNs) for rare diseases the experts from different continents gathered in Paris to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. Endo-ERN and ERICA Coordinator Alberto Pereira introduced the European Rare Disease Research Coordination and Support Action(ERICA) consortium achievements where all the ERNs take part to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

Want to stay up-to-date with ERICA’s activities? Subscribe to their newsletter here.

Continue reading →

In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), Rosan Vegter (Scientific and Education Manager at EATRIS) together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), provided practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD.

This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation.

Check out the recording.

Continue reading →

We extend a warm welcome to our newest ePAG Chris Breen from the Klinefelter’s Syndrome Association UK. Chris shares his journey to diagnosis:

“I wasn’t diagnosed with Klinefelter’s until about 7 years ago when I was 50. And have since discovered I have several underlining health problems which I was previously unaware of.

However, for me the diagnosis was very validating as it explained things that had happened throughout my life I previously attributed to just being slightly different from the average person.

 

Until I had my diagnosis, I had never heard of it, despite working in Healthcare since [...]

Continue reading →

Mark your calendar and save the date!

Monday, April 3, 2023

The 1st Joint EuRRECa and EuRR-Bone meeting will take place in the morning at Leiden University Medical Centre, the day before Endo-ERN General Assembly. Click here to register and see the programme here. Faisal Ahmed’s Inaugural Lecture will take place during the afternoon at Universiteit Leiden. Past event report Oct 2022

ERICA – ERN Data Management Strategy Multistakeholder Workshop, Heidelberg

This workshop included discussions aimed at helping ERNs in setting up, maintaining and improving their registries. The valuable face-to-face interaction, not possible during the recent period, facilitated [...]

Continue reading →

Dr. Arianne Dessens from the Child & Psychiatry Department at Erasmus MC participated in an Endo-ERN Exchange to facilitate the foundation of an international learning network for disorders/difference of sex development (DSD). Her detailed summary outlines the experience of developing a specialized learning network using the ERN Clinical Exchange opportunity.

“Disorders/differences of sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Providers of psychosocial care are facing challenges to find adaptations in line with recent development in medical knowledge and practices and changed patients’ and parental attitudes and expectations regarding clinical management. Harmonization of [...]

Continue reading →