Digital and Data Advisory Group (DAG)

Recognizing the importance and potential impact on rare disease patients of digital technologies, patient data usage as well as artificial intelligence, EURORDIS identified the necessity of bringing rare disease patients' voices into these fields in order to help shape better tailored, ethical and sustainable solutions.

The Digital and Data Advisory Group (DAG) will pursue all aspects regarding digital policies and procedures and will advise EURORDIS in matters that range from situation assessment to strategic decision making.

The DAG is comprised of 11 volunteer patient advocates nominated for a term of 3 years.






Anne Charlet

Lupus Europe

Menia Koukougianni

Karkinaki Awareness for Childhood and Adolescent Cancer

Stephan Meijer


Tanya Collin-Histed

International Gaucher Alliance

Dan Theisen

ALAN - Maladies Rares Luxembourg

Dorica Dan

Romanian Prader Willi Association

José Ángel Aibar

Fundación Síndrome de Dravet (Dravet Syndrome Foundation Spain)

Jana Popova

European Alliance of Neuromuscular Disorders Associations (EAMDA)

Michael Längsfeld


Petra Wilson


Svein Olaf Olsen

International Huntington Disease Association




Page created: 19/01/2021
Page last updated: 17/11/2021
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases