EURORDIS HTA Task Force

The EURORDIS Health Technology Assessment (HTA) Task Force is a group of 12 persons who live with a rare disease or are parents of child with a rare disease.

They are EURORDIS’ members experienced and/or trained at different extent in HTA, with various educational background and stories.

The focus of the Task Force is to discuss any aspect of the assessment and reimbursement of health technologies.

The existence of this Task Force ensures that Eurordis’ position on any HTA-related matter is built on the knowledge and the input of patients. Moreover, its members are engaged in advocating for a scientific, inclusive, and European-shaped HTA, as well as for the legitimate role of patients in this exercise and in the consequent decision-making.

They act under the rules of the Eurordis Chart of Volunteers

The Task Force could also welcome external experts as guests if and when that can benefit the work of the group.

Why it is important for patients

How do healthcare systems decide what are the best treatments and the ones it’s worth to pay for?

Health Technology Assessment (HTA) is the process by which national authorities evaluate the available healthcare options. They look at medical, social, economic and ethical factors to determine healthcare practices at a policy level.

The EURORDIS HTA Task Force is meant to focus on any aspect of HTA that is of interest for patients, experts, and health authorities, at national/local level as well as at the European level.

What work does the task force do

The mission of the Task Force includes informing Eurordis about how health technologies are assessed, which one are reimbursed, how patients are engaged and how decisions are made. Sharing views on the future of HTA at the European level and interact with experts is also part of their mandate.

The Task Force may raise and discus specific cases about reimbursement and access of medicines or medical devices, reply to public consultations, attend conferences, and advocate for legislative initiatives about HTA and the engagement of patients.

The knowledge shared and acquired by the Group is also meant to be shared in liaison with the Task Force member’s communities and networks, so as to raise awareness regarding HTA.

Name

Organisation

Country

Dimitrios ATHANASIOU

Duchenne and Becker muscular dystrophies, UPPMD

Greece

Maria Jesus CUESTA LOPEZ

SMA Europe/ FundAME Spain/ Dravet Syndrome Foundation

Spain

Helma GUSSECK (retired)

Retinal degenerations, Pro Retina Foundation

Germany

Florian INNIG 

BKLF e.V., German Association for People of Short Stature and their Families

Germany

Georgi ISKROV

Institute for Rare Diseases, Bulgaria

Bulgaria

Laetitia LAICH

AFM Téléthon

France

Kate MORGAN

Myeloma Patients Europe, MPE

Scotland, UK

Declan NOONE

Irish Haemophilia Society, Dublin (European Haemophilia Consortium - European Federation)

Ireland

Evy REVIERS

ALS Liga, Belgium (Amyotrophic Lateral Sclerosis and related neuromuscular diseases)

Belgium

Dominique STURZ

Usher Deafblind Austria, Usher Initiative Austria (Pro Rare Austria, National Alliance for RD)

Austria

Russell WHEELER

LHON Society, Leber Hereditary Optic Neuropathic

UK

Baiba ZIEMELE

Latvian Haemophilia Society (Latvian Alliance for Rare Disease)

Latvia

 

Access the documents page below (HTA Task Force members only)

Task force documents

 

Page created: 25/02/2021
Page last updated: 10/03/2021
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases