EJP-RD Advanced Course “Statistical and Operational Challenges with Master Protocols”

March 24th, at 4-6:30 pm CET.

Join the upcoming fourth EJP-RD advanced course titled “Statistical and Operational Challenges with Master Protocols,” held by Professor Franz König. The course will take place on March 24th, 2023 at 4-6:30 pm CET.

Please note that preregistration is mandatory to secure your spot. Additional details, including how to register, can be found on the EJP RD website.

Art contest – Skin to skin

From February 28th 2023 to May 31st 2023

The René Touraine Foundation and its international network on Rare Skin Diseases have been organizing an international art contest since 2015: The Story of my Skin / Ma peau raconte. This year’s theme is Skin to Skin.

The aim of this event is to raise public awareness of rare skin diseases, to allow patients to express themselves and to encourage discussion. Please find more information here

Rare Diseases Day

February 28th

World Diseases Day is a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

• It was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners.
• It provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

Please find more information here: https://www.rarediseaseday.org/what-is-rare-disease-day/

An European Medicines Agency (EMA) survey about the development of a multi-stakeholder platform to promote collaboration for improving clinical trials in the EU !

EUSurvey – Survey (europa.eu) – open until 03 March 2023 at midnight CET !

We have been asked by European Medicines Agency to inform you of the launch of a public consultation concerning the development of a multi-stakeholder platform to promote collaboration for improving clinical trials in the EU as foreseen by Accelerating Clinical Trials in the EU (ACT EU) priority action 3.

This platform will enable regular dialogue between all EU stakeholders on clinical trials, and facilitate the evolution of the clinical trials environment by helping to identify key advances in clinical trial methodologies, technology and science. The platform will serve as a neutral space for the discussion of challenges and the development of practical solutions to enable and drive change. It is envisaged that there will be several phases of development before reaching its final design.

A concept paper outlining the proposal for the creation of the platform has been published together with the public consultation. The objective of which is to gauge interest in the platform, get feedback on priority topics for discussion, and provide comments on the proposal. The multi-stakeholder platform will have its kick-off meeting in Q2 2023.

The public consultation can be accessed at the following survey EUSurvey – Survey (europa.eu) and will remain open until 03 March 2023 at midnight CET.

Those interested can find more information on the web page Accelerating Clinical Trials in the EU (ACT EU).

For any questions, stakeholders can contact ACTEU@ema.europa.eu

NEW ERICA WP4 Webinar : Essential requirements before thinking about a clinical trial

Tuesday 28 February 2023 12:00 – 13:00 CET

In this webinar, Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus will overview what should be done at the very least before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

More information about the Webinar, here.

Please register via given button below:

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(After registering, you will receive a confirmation email containing information about joining the webinar)

Organised by ERICA in collaboration with EJP RD and ERN BOND

Additional information, registration and updates at ERICA website

Please submit any questions to ERICA WP4 team francesca.gurioli@ior.it or ERICA coordinating office

ERN-Skin Workshop : Epidermolysis bullosa: from genes to translation into therapies

The workshop will deliverhttps://www.ejprarediseases.org/our-actions-and-services/training-and-education/ern-workshops/ expert knowledge on the following aspects of EB: clinical and genetic basis, wound and interdisciplinary management, how to design and conduct clinical trials, gene therapy, and models used in translational research.

End of March 2023 (Preliminary date)

Freiburg, Germany