- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
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DITA Task Force
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 |
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 |
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative