DITA Task Force

DITA volunteersThe Drug Information, Transparency and Access (DITA) Task Force closely follows the work done by patients and consumers at the European Medicines Agency (EMA) and in the European Network of HTA agencies (EUnetHTA) in the areas of product information, transparency of the regulatory process and access to medicines.

There are 18 volunteer members of DITA, from EURORDIS member patient organisations, led and supported by EURORDIS staff members Francois Houÿez, Director of Treatment Information and Access, Health Policy Advisor and Anne-Mary Bodin, Operations Assistant.

DITA volunteers bring invaluable knowledge of their own rare disease and national health system. Many are patients themselves living with a rare disease.

DITA works and gives input into several EU projects that EURORDIS is involved in and that concern the rare disease patient community.

The task force meets twice yearly with regular telephone conferences and email correspondence to maintain the workflow.


Disease Area 


Alan Timothy 

Several rare lung diseases (ELF) United Kingdom
Ilaria Galetti Scleroderma


Jana Popova

Several neuromuscular disorders


Diana Marinello

Behcet syndrome


Luc Matthysen

Pulmonary Hypertension


Danijela Szili

Rett Syndrome


Michela Onali

GNE myopathy


Natacha  Vazliti



Russel Wheeler

Leber hereditary optic neuropathy (LHON) Association

United Kingdom

Zsuzsa Almasi

Prader willi syndrome and other rare diseases


Janet Bloor

Duchenne muscular dystrophy

United Kingdom

Antonina Waszczuk

Sanfilippo syndrome


Isabella Brambilla

Dravet syndrome



Vesna Aleksovska


North Macedonia

Claudia Sproedt



Tatiana Foltanova


Slovak Republic


Page created: 02/05/2014
Page last updated: 12/02/2020
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