Daniel Theisen
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Daniel Theisen

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Issue date: July 2, 2025

ID: 1bd9a23b-3768-43ba-92d2-82ce355e0a62

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EURORDIS - Rare Diseases Europe

EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.

Type

Certification

Level

Intermediate

Format

Online

Duration

6 months

Price

Free

Description

The Navigating rare disease research: data, ethics, and AI in Europe online training has been developed in response to the growing need for advocates to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe. Its primary objective is to equip participants with the knowledge and skills to effectively engage with and influence data-driven research initiatives in the rare disease community.

Skills

Data Access

Data Collection

Data Classification

Data Ethics

Informed Consent

data codification

registries

real-world data

GDPR

data protection

genetic data processing