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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases