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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	Organisation	Country
Vesna Aleksovska	Association of citizens for rare diseases "Life with Challenges"	Macedonia
Alba Ancochea	FEDER - Federacion Espanola de Enfermedas Raras	Spain
Claudie Baleydier	A.F.A.F - French Association for Friedreich Ataxia	France
Davor Duboka	Rare Diseases National Alliance	Serbia
Tatiana Foltanova	Slovak Rare Diseases Alliance	Slovak Republic
Fridrik Fridriksson	Rett Syndrome Association	Iceland
Sigurður Jóhannesson	AHC Federation of Europe (Alternating Hemiplegia of Childhood)	Iceland
Marleen Kaatee	PSC Patients Europe	Netherlands
Luc Matthysen	HTAP Belgique asbl (Pulmonary Hypertension)	Belgium
Bojana Mirosavljevic	Metabolic diseases, Batten	Serbia
Lise Murphy	Swedish Marfan Association	Sweden
Inge Schwersenz	SMA Europe	Germany
Leire Solis	IPOPI - International Patient Organisation for Primary Immunodeficiencies	Portugal
Claudia Sproedt	Cystinose-Selbsthilfe e.V.	Germany
Danijela Vlajic	Rett Syndrome Europe	Hungary
Russel Wheeler	Leber hereditary optic neuropathy (LHON) Association	United Kingdom