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.




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

 

Page created: 02/05/2014
Page last updated: 12/02/2020
 
 
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