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
 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases