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The over 400 volunteers involved in EURORDIS activities play a crucial role in raising awareness and shaping policy that benefits everyone living with a rare disease and their families.

All EURORDIS volunteers adhere to the EURORDIS Charter of Volunteers.

Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs).

The SPAG (Social Policy Action Group) advocates for better access to holistic care, and the guarantee of social and human rights

The Drug Information, Transparency and Access Task Force (DITA) focuses on the areas of product information, transparency of the regulatory process and access to medicines.

The Newborn Screening Working Group (NBS-WG) develops principles for harmonious uptake of the NBS programs across the Member States.

The HTA Task Force facilitates the participation of patients in health technology assessment activities.

The Rare Disease Day Working Group co-creates the annual global campaign.

The Therapeutic Action Group (TAG) is composed of EURORDIS volunteers in the scientific committees and working parties at the European Medicines Agency (EMA).

MoCA provides a mechanism for European countries to collaborate on coordinated access to orphan medicines in a voluntary, dialogue-based approach, intended to create a fluid set of interactions between key stakeholders, across all aspects of a product. 

  • Who are EURORDIS volunteers?

    Most EURORDIS volunteers are people living with a rare disease, family members or directly affected by a rare disease. Due to the lack of available information for many rare diseases, patients find themselves becoming experts of their own disease and of their national health care system.

    Because of the scarcity of patients for each rare disease, each volunteer has different areas of expertise based on their personal experience and training. All volunteers are vital to improve the authenticity of our advocacy efforts.

    EURORDIS and its volunteers, representing people with rare diseases, thus speak with one collective voice, advancing the cause of rare diseases at the European level. All EURORDIS volunteers adhere to the Volunteer Charter.

    The time that our volunteers spend working for EURORDIS is an asset and a resource for our organisation. Their time is therefore recorded and accounted in our financial statements.

  • What do EURORDIS volunteers do?

    EURORDIS volunteers are patient advocates who are mainly involved in advocacy activities and/or disseminating public information to raise awareness of the common challenges and injustices faced by people living with a rare disease as well as promoting EURORDIS’ proposals to address those challenges. These challenges include obtaining access to proper diagnosis, adequate healthcare services, medicines and therapies and adapted social services.

    Through their activities with EURORDIS, volunteer patient advocates go on to be involved in a diverse number of committees dedicated to improving the lives of people living with a rare disease and their families.

    Below are the main dedicated groups of people who volunteer for EURORDIS :

    • European Public Affairs Committee (EPAC)
    • Therapeutic Action Group (TAG)
    • Drug Information, Transparency and Access (DITA) Task Force
    • Social Policy Action Group (SPAG)
    • Newborn Screening Working Group (NBS-WG)
    • HTA Task Force
    • Digital and Data Advisory Group (DAG)
    • Mechanism of Coordinated Access to orphan medicinal products (MoCA)
    • RareConnect moderators:

    RareConnect moderators are usually patient advocates representing a patient group or individuals from all over the world that are looking for others with the same condition.

    The role of a moderator on RareConnect is to ensure content and information is safe and updated and that questions are answered or people are referred to existing resources when available. The role of the moderators, it is not to represent only an organisation or a country, but to help people communicate with each other.

    For more information contact

  • How do EURORDIS volunteers become experts?

    EURORDIS volunteers have received training through the EURORDIS Open Academy so they have the confidence and knowledge needed to bring their expertise on health care, research and medicines development to discussions with policy makers, industry and scientists.

If you are interested in learning more about EURORDIS volunteers contact

EURORDIS Working Groups

EURORDIS European Public Affairs Committee (EPAC)

The EURORDIS European Public Affairs Committee (EPAC) was created on 27 March 2004 to provide support to the advocacy activities of EURORDIS. It is a permanent internal Committee whose members have an official mandate to represent our organisation.

The EPAC has three main purposes:

    • To share information on the latest European policies affecting rare diseases, from research to health care and services

    • To discuss views and seek support from other EURORDIS colleagues

    • To determine the position of EURORDIS on specific issues

The EPAC is co-chaired by the President of EURORDIS and the Chief Executive Officer. The EPAC members communicate via emails on a regular basis in order to react promptly to advocacy issues affecting rare disease patients. They adopt positions by consensus. The positions of the EPAC are submitted to the Board which adopts all official positions and documents.

Composition of the EPAC:

    • EURORDIS Board Members

    • Former Board members who still have a mandate to represent EURORDIS

    • EURORDIS Volunteers on EMA Scientific Committees (TAG)

    • EURORDIS Volunteers on the Commission Expert Group on Rare Diseases (PAG)

    • EURORDIS Staff involved in advocacy

Therapeutic Action Group (TAG)

The Therapeutic Action Group (TAG) was created in January 2009 and is composed of EURORDIS volunteers in the scientific committees and working party at the European Medicines Agency (EMA). These committees include the Committee for Orphan Medicinal Products (COMP), the Paediatric Committee (PDCO), the Committee for Advanced Therapies (CAT) and the Patients’ and Consumers’ Working Party (PCWP)

These patients’ representatives dedicate their time, experience and expertise to the task of evaluating dossiers of medicinal products requesting orphan designation, evaluation for use in paediatric patients, evaluation of advanced therapies, as well as ensuring accurate, transparent and available information to patients on authorised medicinal products.

A monthly report of activities of EMA Committees and EURORDIS patients’ representatives in these Committees is produced and disseminated to all members of the TAG, EURORDIS Task Forces, the EURORDIS Open Academy alumni and the EURORDIS Board.

Social Policy Action Group (SPAG)

The Social Policy Action Group (SPAG) supports EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights.

The SPAG is composed of 20 volunteers, representing 13 European countries and a diversity of rare diseases, disabilities, ages, and backgrounds. Its members are individuals living with a rare disease and family members, some of whom are also experts in social policy and human rights.

Why is the SPAG important?

Most people who live with a rare disease face serious everyday challenges and many societal barriers, while also living with visible or invisible disabilities. Such barriers prevent people living with a rare disease and their families, often the main carers, from living more independently and from fully participating in various areas of society, while also exposing them to a high level of psychological, social and economic vulnerability.

The SPAG supports EURORDIS’ work to change that and to progress towards a world where all people living with a rare disease can achieve their full potential, in a society that leaves no one behind.

Find out more about the SPAG in its Terms of Reference, published within the EURORDIS By-Laws.

SPAG members

 Name Country Organisation
Adéla Odrihocká Czechia ČAVO, Rare Diseases Czech Republic
Alba Parejo Spain AsoNevus
Caroline Roatta France Association Bernard Pépin pour la maladie de Wilson
Charissa Frank Belgium – Vlaamse Vereniging voor Erfelijke
Claudio Pirola Italy, Sweden DysNet-Dysmelia Network
David Ross United Kingdom Rare Disease Male Mental Health Support Group
David Sanchez Spain Retina Murcia; FEDER – Federación Española De Enfermedades Raras
Dorica Dan Romania RONARD – Romanian National Alliance, Romanian Prader-Willi Association
Jakub Gietka Poland Fundacja Celując w Przyszłość – Aiming for the Future Foundation
Jennifer Reyes France, USA Association La Maison 8p
Jurn Anthonis Belgium Vereniging voor Spina Bifida & Hydrocephalus vzw
Kirsty Hoyle United Kingdom Metabolic Support UK
Marco Sessa Italy Associazione per l’Informazione e lo Studio dell’Acondroplasia
Nicole Faccio United Kingdom, USA
Oleksandra Oliinyk Ukraine UNICEF Ukraine
Oriana Sousa Portugal Childhood Cancer International (CCI) Europe; EU Network of Youth Cancer Survivors
Petra Brügmann Germany European MEN Alliance e.V.
Teresa Pais Portugal, Austria Childhood Cancer International (CCI) Europe
Veronique Van Assche Belgium SMA Belgium; SMA Europe
Zhana Chokheli Georgia SCN2A GEORGIA

The mandate of these SPAG members is of 3 years, from January 2024 to December 2026.

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 the 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  Disease Area  Country
Alan Timothy Several rare lung diseases (ELF) United Kingdom
Ilaria Galetti Scleroderma Italy
Jana Popova Several neuromuscular disorders Bulgaria
Diana Marinello Behcet syndrome Italy
Luc Matthysen Pulmonary Hypertension Belgium
Danijela Szili Rett Syndrome Hungary
Michela Onali GNE myopathy Italy
Natacha  Vazliti Melanoma Portugal
Russel Wheeler Leber hereditary optic neuropathy (LHON) Association United Kingdom
Zsuzsa Almasi Prader Willi syndrome and other rare diseases Romania
Janet Bloor Duchenne muscular dystrophy United Kingdom
Antonina Waszczuk Sanfilippo syndrome Sweden
Isabella Brambilla Dravet syndrome Italy
Vesna Aleksovska All North Macedonia
Claudia Sproedt Cystinosis Germany
Tatiana Foltanova All Slovak Republic

Newborn Screening Working Group (NBS-WG)

Newborn screening is the process of systematically testing newborns just after birth for certain treatable diseases. Ideally, this practice is part of a larger programme that includes confirmatory diagnosis, immediate care, treatment and follow-up. The EURORDIS Newborn Screening Working Group (NBS-WG) was set up to review current policy and practice in the field of NBS, in order to develop principles for harmonious uptake/adoption of the NBS programs across the Member States with a view to delivering maximum benefit and improving outcomes for babies born with rare diseases.

Members of NBS-WG include representatives from patient organizations, international screening societies and international and national federations with a focus on NBS.

In January 2021, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, set out 11 Key Principles to support a harmonised European approach to Newborn Screening.

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 discuss 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
Dominique Sturz Usher Deafblind/Alliance Pro rare Austria Austria
Florian Innig BKMF e.V Germany
Inger-Margrethe Stavdal Paulsen OIFE/NFOI Norway
Russel Wheeler Lhon Society UK but living in France
Sally Tungate NPUL UK
Niko Costantino Cometa ASMME Italy
Johan de Graaf Dutch Pituitary Foundation NL
Arabela Acalinei EAMDA Romania

Digital and Data Advisory Group (DAG)

Recognizing the importance and potential impact on rare disease patients of digital technologies, patient data usage as well as artificial intelligence, EURORDIS identified the necessity of bringing rare disease patients’ voices into these fields in order to help shape better tailored, ethical and sustainable solutions.

The Digital and Data Advisory Group (DAG) will pursue all aspects regarding digital policies and procedures and will advise EURORDIS in matters that range from situation assessment to strategic decision making.

The DAG is comprised of 11 volunteer patient advocates nominated for a term of 3 years.

Name Organisation
Menia Koukougianni Karkinaki Awareness for Childhood and Adolescent Cancer
Stephan Meijer NVHP
Dan Theisen ALAN – Maladies Rares Luxembourg
Dorica Dan Romanian Prader Willi Association
Jana Popova European Alliance of Neuromuscular Disorders Associations (EAMDA)
Petra Wilson
Ioana Todorova Bulgarian Association of Moschcowitz syndrome (TTP)
Christian Pfeuffer DGM e.V.
Antonina Waszczuk SMA and other Neuromuscular diseases