REGISTER: International Meeting on Rare Disorders of the RAS-MAPK Pathway

In the tradition of our biennial workshop held as a satellite to the ESHG conference, we are pleased to invite you once again to a face-to-face meeting in Berlin on 31 May and 1 June 2024.

Main topics shall be:

Nosology of RASopathies New insights into the molecular basis of RASopathies Genotype phenotype correlations Clinical aspects (cardio-vascular, hemato-oncological, growth, metabolic, neurodevelopmental) Innovative treatment approaches in model systems and clinical use

As for the previous meetings, the organisers will ask selected experts to present their research, but we will also have some free slots and therefore welcome the submission of abstracts [...]

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ePAG story: Stay safe on holiday with a European network

Jette Kristensen, President of Addison Foreningen Danmark (Danish Addison Patient Association) and Endo-ERN ePAG was kind enough to share this example of European cooperation, which showcases the power of patient networks.

 

Travelling abroad – and then finding out you’ve forgotten your medication. It’s a nightmare scenario for any Addison’s patient.

But that’s exactly the situation Holger, one of our members, found himself in when he went on holiday to Italy in August this year: he had forgotten his Florinef. He posted a message in our Facebook group asking if anyone else had experienced the same thing and if so, [...]

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EXTENDED: Hotel deadline for Endo-ERN General Assembly

Have you registered for the Endo-ERN General Assembly? This event will take place 23-24 April in Milan, Italy at the Radisson Blue Hotel.

The deadline for our special event rate for hotel rooms has been extended until February 22, 2024. You can find out more about programme and how to travel to the event at our dedicated GA section on our website. Click here to explore.

 

We look forward to seeing you in Milan!

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INFO: Next steps for ERNs conclusions from Rare Disease Conference October 2023

The European Economic and Social Committee (EESC) organised a memorable conference on Rare Diseases and European Reference Networks (ERNs) under the auspices of the Spanish Presidency of the Council of the EU and in cooperation with the authorities of the Basque Country, on 11 October 2023 in Bilbao. Endo-ERN staff from the project office were in attendance.

The conclusions of the conference are now available on the on the event’s webpage, where you will also find reports, photos, presentations, recordings and press articles.

The hope is that this event will be followed by many more projects where [...]

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REGISTER: Orphan Medicines Development – ask the European regulator webinar

The EMA’s Orphan Medicines Office is hosting an interactive webinar on Rare Disease Day on 29 February 2024, to answer questions that developers of products for rare diseases or researchers in this field might have on orphan designations and rare disease development. The webinar will feature:

short presentations on the background of orphan designation and the benefits it has brought to patients; a live question-and-answer session enabling participants to ask their questions on orphan medicines development to a panel of regulatory experts.

More info: Orphan medicines development – ask the European regulator | European Medicines [...]

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REGISTER: EMA/ACT Training: Transitioning trials to the CTR (CTIS) for non-commercial sponsors

This training event aims to support non-commercial sponsors of clinical trials in transitioning their clinical trials that are expected to continue after 30 January 2025 from the Clinical Trials Directive to the EU Clinical Trials Regulation (Regulation (EU) No 536/2014). Moreover, the event will provide useful training in preparing new clinical trials following the Clinical Trial Regulation (CTR).

From 31 January 2025 onwards only the CTR and its Delegated Acts will apply. Sponsors, therefore, need to transition any trials that will continue after 30 January 2025 from the Clinical Trials Directive to the legal framework [...]

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REGISTER: ESE Talks…Congenital hypothyroidism and related problems

The next ESE Talks…webinar is Tuesday 6 February 2024, 17:00 – 18:15 CET

Chairs: Edward Visser (The Netherlands) and Athanasia Stoupa (France)

Fetal thyroid disorders

Dominique Luton (France)

Primary congenital hypothyroidism

Nadia Schoenmakers (UK)

Secondary congenital hypothyroidism

Paul van Trotsenburg (The Netherlands)

Panel/group discussion

Led by Edward Visser (The Netherlands) and Athanasia Stoupa (France)

 

Register now!

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OPPORTUNITY: PhD positions at Lubeck

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

Several PhD postions are available at the University of Lubeck’s Collaborative Research Center (CRC) 1665. Sexdiversity – Determinants, Meaning and Effects of Gender Diversity in Socialcultural, Medical and Biological Contexts is dedicated to researching the diversity of biological sex over the next four years.

Check out more information about CRC 1665 and the available positions.

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RDD EVENT: Ministry of Health Malta

On the occasion of the World Rare Disease Day, 29 February, 2024, the Ministry for Health of Malta, is hosting a one-day workshop on Cross-border Healthcare, Patients’ Rights and Rare Disease.

This workshop is being organised in collaboration with the European Commission and is being held under the auspices of the President of the Republic of Malta, His Excellency Dr. George Vella. Foreign and local speakers, including individuals with rare disease, will be coming together to share their personal experiences and provide updates on these important, under-recognized aspects of health care.

 

Register now.

Agenda

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