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:

The survey will be open until 15th June.

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SURVEY: Public Consultation on the Strategic and Innovation Agenda of the RD Parnership is now open for public consultation

Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision that aims at leaving no one behind by supporting robust patient need-led research, by utilising and maximising the power of health and research data, by engaging and coordinating regional, national, EU and international alignment in order to accelerate the development of new treatments and diagnostic pathways.

To build its strategy on the voice and input of all stakeholders and as part of the preparatory process of this future Rare Diseases Partnership (foreseen start in 2024) [...]

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Endo-ERN GA Highlights

Over 150 members of Endo-ERN gathered at the Amsterdam UMC earlier this month for the annual Endo-ERN General Assembly (GA). The was the first in-person meeting of our members since 2019.

It was a productive 2 days with nearly 20 interactive sessions. Our members were very engaged with valuable presentations from external speakers that included:

Landscape of Rare Disease Research in Europe, Christina Kyriakopoulou, European Commission and Mari Murel, ERICA Best Practise Designing Clinical Trials for Rare Endocrine Disease, Ralf-Dieter Hilgers, University Hospital Aachen ESE &ESPE Rare Disease Committee Update

Other sessions focused on network activities including main thematic groups [...]

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NEW: Registries website

Today is an exciting day for our EuRRECa colleagues. A project that has been in the works for weeks and the launch date is finally here!

We are excited to announce their new website:

There could not be a more perfect time to launch it than on 3 April 2023 during the first EuRRECa / EuRR-Bone joint symposium.

With new features tailored to patients, clinicians and researchers, teasers of upcoming events, news and so much more!

Whilst it may not be perfect, they are still working on it. The site will be under construction over the [...]

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Update: Rare Disease Week in Brussels

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!

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Endo-ERN ePAGs at ICOSEP Orlando

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.


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Available now: Rare Disease Day Supplemental

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.


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Congratulations Alberto!

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.

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Endo-ERN and ERICA Coordinator Alberto Pereira at the International Conference on Clinical Research Networks for Rare Diseases

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.

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