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 

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

 

Page created: 02/05/2014
Page last updated: 04/09/2018
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases