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
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases