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.




Vesna Aleksovska

Association of citizens for rare diseases "Life with Challenges"


Alba Ancochea

FEDER - Federacion Espanola de Enfermedas Raras


Claudie Baleydier

A.F.A.F -  French Association for Friedreich Ataxia


Davor Duboka

Rare Diseases National Alliance


Tatiana Foltanova

Slovak Rare Diseases Alliance

Slovak Republic

Fridrik Fridriksson

Rett Syndrome Association


Sigurður Jóhannesson

AHC Federation of Europe (Alternating Hemiplegia of Childhood)


Marleen Kaatee

PSC Patients Europe


Luc Matthysen

HTAP Belgique asbl (Pulmonary Hypertension)


Bojana Mirosavljevic

Metabolic diseases, Batten


Lise Murphy

Swedish Marfan Association


Inge Schwersenz

SMA Europe


Leire Solis

IPOPI - International Patient Organisation for Primary Immunodeficiencies


Claudia Sproedt

Cystinose-Selbsthilfe e.V.


Danijela Vlajic

Rett Syndrome Europe


Russel Wheeler

Leber hereditary optic neuropathy (LHON) Association

United Kingdom


Page created: 02/05/2014
Page last updated: 04/09/2018
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases