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.

 

 

 

 Name

Organisation

Anne Charlet

Lupus Europe

Menia Koukougianni

Karkinaki Awareness for Childhood and Adolescent Cancer

Stephan Meijer

NVHP

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

PRO RETINA

Petra Wilson

 

Svein Olaf Olsen

International Huntington Disease Association

 

 

 

Page created: 19/01/2021
Page last updated: 17/11/2021
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 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