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EURORDIS appointed by European Commission to Health Technology Assessment Stakeholder Network

May 2023

5 May, Brussels – The European Commission’s Directorate-General for Health and Food Safety (DG SANTE) has appointed EURORDIS-Rare Diseases Europe as a member of the Commission’s Health Technology Assessment (HTA) Stakeholder Network.

As foreseen in the HTA Regulation (EU) 2021/2282 and contributing to its implementation, the purpose of the HTA Network is to facilitate dialogue between organisations with an interest in the EU Cooperation on HTA and the Member States Coordination Group on HTA in order to promote inclusiveness and transparency in this area of work across the European Union. Welcoming the appointment, François Houÿez, Information & Access to Therapies Director & Health Policy Advisor at EURORDIS, said:

We are delighted that through the Health Technology Assessment Stakeholder Network, we will be able to contribute to important dialogues with the European Commission and the Member States on behalf of Europe’s rare disease patient population. Given the rapid and promising developments in health technology, our appointment to the Network is an important step towards making sure that those who live with a rare disease are not left behind.

The HTA process plays a crucial role in determining the availability of new therapies and treatments for rare disease patients, who often face significant challenges in accessing appropriate treatment and care.

The Commission’s HTA Stakeholder Network comprises organisations that have an interest in the EU Cooperation on HTA. Its members will be involved in activities such as consultations on – and amendments to – the HTA Coordination Group’s work programme and meetings.

The inclusion of EURORDIS in the Health Technology Assessment Stakeholder Network ensures that the voice of rare disease patients is heard and considered in the decision-making process.

For more information, please contact Julien Delaye, our Patient Engagement Manager for HTA, at

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About EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.


Julien Poulain

Communications Manager

EURORDIS-Rare Diseases Europe

+33 6 42 98 14 32