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Volunteers

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 holistic & integrated care.

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.

RareConnect moderators animate RareConnect communities.

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 info@rareconnect.org

  • 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@eurordis.org.


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)

Following the end of the mandate of the Social Policy Advisory Group (2015-2018), EURORDIS launched the Social Policy Action Group in April 2019. The EURORDIS Social Policy Action Group (SPAG) is an active group of volunteer patient advocates who disseminate and contribute to the positions of EURORDIS and its members, advocating for holistic and integrated care for people living with a rare disease and their families.

 NameOrganisationCountry
Antonina WaszczukSanfilippo InitiativeGermany
Dorica DanRONARDRomania
Eleni AntoniouThalassaemia International FederationCyprus
Fabiola BertinottiFSHD EuropeItaly
Gábor PogányHUFERDISHungary
Ivana BadnjarevićNORBSSerbia
Maria MontefuscoRare Diseases SwedenSweden
Patricia AriasFEDERSpain
Vlasta ZmazekCroatian National Alliance for Rare DiseasesCroatia

The Social Policy Action Group was preceded by the Social Policy Advisory Group, active from 2015 to 2018, with a mandate focused on “informing on patients’ and families’ social challenges and advising on social policy, provision of social care and related issues, guaranteeing the formulation of patient-centric approaches to the different social challenges”.


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 GalettiSclerodermaItaly
Jana PopovaSeveral neuromuscular disordersBulgaria
Diana MarinelloBehcet syndromeItaly
Luc MatthysenPulmonary HypertensionBelgium
Danijela SziliRett SyndromeHungary
Michela OnaliGNE myopathyItaly
Natacha  VazlitiMelanomaPortugal
Russel WheelerLeber hereditary optic neuropathy (LHON) AssociationUnited Kingdom
Zsuzsa AlmasiPrader Willi syndrome and other rare diseasesRomania
Janet BloorDuchenne muscular dystrophyUnited Kingdom
Antonina WaszczukSanfilippo syndromeSweden
Isabella BrambillaDravet syndrome Italy
Vesna AleksovskaAllNorth Macedonia
Claudia SproedtCystinosisGermany
Tatiana FoltanovaAllSlovak 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.


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 a child with a rare disease. They are EURORDIS members experienced and/or trained to a different extent in HTA, with various educational backgrounds 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 the 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.

NameOrganisationCountry
Dimitrios ATHANASIOUDuchenne and Becker muscular dystrophies, UPPMDGreece
Maria Jesus CUESTA LOPEZSMA Europe/ FundAME Spain/ Dravet Syndrome FoundationSpain
Helma GUSSECK (retired)Retinal degenerations, Pro Retina FoundationGermany
Florian INNIG BKLF e.V., German Association for People of Short Stature and their FamiliesGermany
Georgi ISKROVInstitute for Rare Diseases, BulgariaBulgaria
Laetitia LAICHAFM TéléthonFrance
Kate MORGANMyeloma Patients Europe, MPEScotland, UK
Declan NOONEIrish Haemophilia Society, Dublin (European Haemophilia Consortium – European Federation)Ireland
Evy REVIERSALS Liga, Belgium (Amyotrophic Lateral Sclerosis and related neuromuscular diseases)Belgium
Dominique STURZUsher Deafblind Austria, Usher Initiative Austria (Pro Rare Austria, National Alliance for RD)Austria
Russell WHEELERLHON Society, Leber Hereditary Optic NeuropathicUK
Baiba ZIEMELELatvian Haemophilia Society (Latvian Alliance for Rare Disease)Latvia