Recursos para a formação (Inglês)

Os programas e os recursos para formação da EURORDIS foram concebidos para reforçar a capacidade de os representantes dos indivíduos com doenças raras tomarem parte em ensaios clínicos e se envolverem no desenvolvimento de medicamentos e no processo regulador na Europa. A formação capacita os representantes dos doentes a promover com eficácia o tema das doenças raras. Mais informações sobre as condições de utilização dos módulos de formação.

"Empowering Patients, Inspiring Action"

 

Summer School

A new format was developed for the Summer School in 2015 that combines training for both expert patients and researchers on medicines development.

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Pre-Summer School Training Module

Overview of the topics that are covered at the Summer School as well as exercises and quizzes to familiarise trainees with some of the key concepts and issues presented

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Medical Research

In this section you will be able to learn more about the medicines discovery process, preclinical testing, clinical trials, and methodology and statistics used in medicines development.

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Ethics

Learn more about the important role of ethical considerations and ethics committees in medicines research and development.

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Regulatory Framework

In this section, you can learn about regulatory affairs including legal framework, guidelines and Health authorities’ requirements that influence the medicines development process.

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European Medicines Agency (EMA)

This section explains how the EMA protects and promotes public health through its committees and working parties, and how patient representatives can get involved.

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Benefit-Risk Assessment and Pharmacovigilance

This section explains how medicines are evaluated to ensure their benefit outweighs their risk and to limit any untended, harmful effect on the body.

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Market Access

In this section you will learn about pharmacoeconomics and the process by which a company gets a medicinal product to market so that it becomes available for patients.

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Other

This section focuses on practical topics for patient advocates and includes presentations on projects which EURORDIS partners and which promote patient involvement.

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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases