Training on translational medicine for patient advocates

Provided by EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

Eurordis

*The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.
Through the EURORDIS Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development.

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Biosafety and biosecurity expertise

Provided by EUROPEAN RESEARCH INFRASTRUCTURE ON HIGHLY PATHOGENIC AGENTS (ERINHA)

Erinha

Access to high containment, biosafety and biosecurity expertise.
ERINHA’s senior scientists and experts in biosafety and biosecurity with long-standing experience in operating and maintaining biocontainment facilities (BSL4 and complementary) provide expertise on:
• Development of research programs on high-consequence pathogens
• Developing risk assessments
• Building and operating a high containment facility
• Designing and implementing a biosafety program
• Other expertise related to high containment research facilities

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EURORDIS promotes the implementation of services adapted to the needs of people living with a rare disease and provides:
* Connect with a patient organisation
* Rare disease helplines: offer social, psychological and information solutions to people living with a rare disease.Specialised Social Services are instrumental to the empowerment of people living with rare diseases and essential to the improvement of their well-being and health.
* Find a specialised Social Service
* Medical expertise

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DNA Bank

Provided by GENETHON

Genethon

Genethon’s DNA and Cell Bank is to promote advances in genetic research by providing the scientific community with a high quality cell and human tissue products resource.
Europe’s leading bank for genetic diseases, it serves the whole of the medical and scientific community.
Genethon has an imaging platform capable of generating and collecting all the clinical data which allow the evaluation of the efficiency, the toxicity and the side effects of the gene therapy product.

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Preclinical platforms

Provided by GENETHON

Genethon

Genethon has platforms available which are capable of generating and collecting all the preclinical data which make it possible to evaluate efficacy, toxicity and adverse effects of a gene therapy product, including functional exploration, imaging, histology, cytology as well as an animal experimentation center

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Training on technologies, methodological and computer skills

Provided by IFB - FRENCH INSTITUTE OF BIOINFORMATICS

france bioinformatique

IFB provides IFB users (biologists, biomedical and bioinformaticians) with a training offer that takes into account the wide diversity of needs and expectations:

– diversity of computer skills (no command line experience, occasional use, familiar, program a little)
– specific courses on new technologies or on biological applications (e.g. NGS, long reads, metabolomics…)
– generic methodological skills (statistics, good programming practices, etc.)
– advanced use of IT technologies (HPC, virtualisation, cloud computing, interoperability, FAIR practices, integrative bioinformatics…)
– good training practices (pedagogical approaches, reuse of materials, etc.)

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Automated cell screening technology

Provided by APTEEUS

APTEEUS

APTEEUS offers access to automated cell screening technology in partnership with patient organizations, research teams and pharmaceutical companies

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 Bioinformatics service 

Provided by IFB - FRENCH INSTITUTE OF BIOINFORMATICS

france bioinformatique

The IFB’s services have two main objectives: the deployment of a high-performance bioinformatics service optimized for the needs of the life sciences communities (university laboratories and industries) and the development of innovative bioinformatics resources to address strategic challenges in health, environment and agriculture. As such, IFB provides support, account opening, software and database installation, website and virtual machine hosting, software/database/ information system development and bio-data analysis

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