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DITA Task Force

DITA volunteers The 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.

Name	Disease Area	Country
Alan Timothy	Several rare lung diseases (ELF)	United Kingdom
Ilaria Galetti	Scleroderma	Italy
Jana Popova	Several neuromuscular disorders	Bulgaria
Diana Marinello	Behcet syndrome	Italy
Luc Matthysen	Pulmonary Hypertension	Belgium
Danijela Szili	Rett Syndrome	Hungary
Michela Onali	GNE myopathy	Italy
Natacha Vazliti	Melanoma	Portugal
Russel Wheeler	Leber hereditary optic neuropathy (LHON) Association	United Kingdom
Zsuzsa Almasi	Prader willi syndrome and other rare diseases	Romania
Janet Bloor	Duchenne muscular dystrophy	United Kingdom
Antonina Waszczuk	Sanfilippo syndrome	Sweden
Isabella Brambilla	Dravet syndrome	Italy
Vesna Aleksovska	All	North Macedonia
Claudia Sproedt	Cystinosis	Germany
Tatiana Foltanova	All	Slovak Republic