ERICA Newsletter Winter 2021 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
 
 
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erica-start

ERICA has been successfully launched!

Official start of The European Rare Disease Coordination and Support Action (ERICA) was 1st of March 2021 and the first General Assembly and the kick-off meeting held 27th-28th May online. Different activities under Work Packages (WP) are getting more wind under their wings and several WP-specific Expert Working Groups (EWGs) are already actively gathering.

 
 
 
 
ga2021-online-meeting
 

ERICA 1st General Assembly

The aim of the GA is to inform all the beneficiaries about the ERICA project in more detail and to raise more awareness about the Rare Disease Research perspectives and cooperation within the ERN’s and other relevant partners. In addition each WP held their first Expert Working Group meeting.

The international Rare Disease research was represented at the highest level, including presentations by the chair of the International Rare Diseases Research Consortium (IRDiRC), by the CEO of EURORDIS-Rare Diseases Europe, by the coordinator of EJP RD, and by European Commission representatives.

 
 
 
 
 

Educational Webinar available

  erica_webinar_211108

In this webinar, Anton Ussi, ERICA WP5 co-lead from EATRIS introduces the cutting edge resources and research services provided by the European Life Science Research Infrastructures (LS RIs) in the field of rare diseases.

 
 
 
 
 
Ralf-Dieter Hilgers

Clinical Trials for Rare Diseases: Present and Future

ERICA WP4 leader prof. dr. Ralf-Dieter Hilgers participated ERN Liver Meeting in Hamburg to give a workshop and to talk about innovative trial designs.

 
 
 
 
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Joint Transnational Call 2022: Funding opportunity for research projects

  JOINT TRANSNATIONAL CALL (1)

Call opens December 14th.

Following the successful implementation of three Joint Transnational Calls since 2019, EJP RD is glad to announce the 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."

An information webinar will be held on December 16th from 14.00-15.30 (CET).

 
 
 
 
EJPRD logo
 

Horizon Europe Call for Proposals: Development of new effective therapies for RD

The European Commission (EC) has opened a new funding call titled “Tackling diseases (Two Stage - 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases.

Support for proposals from EJP RD 

Training Webinar: Does Randomization matter in RD clinical trials?

As part of the EJP RD Training series, this advanced-level training webinar is held on December 14th

First a 1.5-hour training in less frequently applied randomization procedures and their performance on the level of evidence, followed by 1 hour panel discussion with experts from regulatory, pharma-industrial, academic, and clinical fields.

 
 
 
 
 
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Update on vaccinations in rare disease patients

ERN RARE-LIVER is organising a Webinar on the topic of SARS-COV-2 vaccinations in rare disease patients.  This invitation extends to all ERNs.

Tuesday 14 December 2021 from 17:00 to 17:45 (CET). 

 

 
 
 
 
 
ERN Workshops (9)

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

 
 
 
 
 

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

EMA medicines  

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 indication with the view to have this new use formally authorised by a regulatory authority. This is a way of making new treatment options available to patients.

 
 
 
 
 

The AID4RARE proposal submitted jointly by consortium that includes 5 European Reference Networks

  Aid4rare

The AID4RARE consortium has joined 5 European Reference Networks (the EC program networking leading experts in RDs) together with academic and industrial experts in computer science to develop novel AI-based solutions:

  1. a Natural Language Processing (NLP) tool to extract and structure information from unstructured data from different clinical sources;
  2. an interoperability platform to share data among EHR and RD registries; and
  3. an AI-powered virtual assistant to detect patients at risk for RDs.
 
 
 
 
Pseudonymisation and Anonymisation Workshop

The workshop is jointly organised by ERICA and EJP RD:

 
 

  Data Sharing

During this first workshop  Wednesday 15th December 3pm-4pm CET,  the techniques and algorithms to anonymise and pseudonymise healthcare data from patients with rare diseases are discussed. A special focus is be given to the challenges associated with preserving the privacy of patients with rare diseases. The advantages and drawbacks of pseudonymised and anonymised data both in terms of research outcomes and privacy protection level will be discussed. Finally, in relation with the GDPR regulation, the legal implications of sharing anonymised and pseudonymised data with external stakeholders will be examined. 

 
 
 
 
 
SAVE THE DATES: 20-22th June 2022 Bologna
 
 
Bologna, Instituto

The next 2nd ERICA General Assembly

 is scheduled to take place in Bologna, Italy. Hosted by Luca Sangiorgi, ERN BOND, Instituto Ortopedico Rizzoli. 2 days General Assembly and Work Package specific meetings plus 1 day for satellite meetings.