The European Rare Disease Research Coordination and Support Action (ERICA) 1 year!

One year ago, on March, 1st 2021 the European Rare Disease Research Coordination and Support Action (ERICA) started officially! The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

It has been challenging year due to Covid circumstances, but nevertheless productive year with great start of the different WP-specific activities and their Expert Working Groups. Great work has been done by ERICA’s enthusiastic WP-leads/board members, [...]

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ERN Workshop on Endocrine cancer: A challenge in adults and children.

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.
The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

Registration closes on January 28th, 2022

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EMA is launching a pilot to support the repurposing of established medicines for use in new indications by NGOs and academia.

EMA and the Heads of Medicines Agencies (HMA) are launching a pilot project to support the repurposing of medicines as a follow-up to the European Commission’s Expert Group on Safe and Timely Access to Medicines for Patients (STAMP) discussions on a proposal for a medicines repurposing framework.

The aim of this initiative is to support not-for-profit organisations and academia to gather or generate sufficient evidence on the use of an established medicine in a new Read

 
 
 
 
 
 

Call for Members: IRDiRC Task Force on “Enabling and Enhancing Telehealth for Rare Diseases Across the Globe

The Funders Constituent Committee (FCC) have set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors.

This will be accomplished through survey and systematic review of existing models of telehealth, their uptake and usage by the rare disease community, and their specific value and effectiveness. The Task Force will then develop “best practices” for introducing telehealth services into communities where they would be most beneficial using realistic and culturally [...]

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EJP RD Joint Transnational Call 2022, a funding opportunity for RD research projects

The European Joint Programme on Rare Diseases (EJP RD) announced the upcoming launch on December 14th of the fourth EJP RD Joint Transnational Call (JTC) 2022, aimed at funding multilateral research projects on rare diseases under the EJP-COFUND action.

The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project, with the call topic being “Development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.”

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Share4Rare Call4Projects 2022 for patient-centred research initiatives

The 2nd Share4Rare Call for Research Projects will be open until December 10th 2021.

Share4Rare aims to put rare diseases patients at the centre of research, not only by asking them directly regarding their condition but also by providing them a safe platform where they can participate in collaborative research projects.

The Share4Rare platform enables to gather data from patient and caregivers on disease related questions and other areas of scientific interest: burden and impact of the disease, its natural history, how the disease affects quality of life, etc.

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