EURORDIS is extremely grateful to the group of dedicated individuals who offer their time and expertise to improve the lives of people living with a rare disease and their families. 

Over the years, EURORDIS volunteers have played a crucial role in making EURORDIS an independent, strong voice, shaping healthcare policy that benefits people with rare diseases.

Most EURORDIS volunteers are rare disease patients or family members. 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.

EURORDIS volunteers are highly committed to the rare diseases cause, sharing, together with staff, the EURORDIS Board of Directors and other volunteers, the mission to improve the lives of people living with a rare disease and their families. 

EURORDIS volunteer patient advocates 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. 

The scarcity of patients for each rare disease along with scattered expertise and resources pose a real challenge to patient advocacy. 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. Each volunteer contributes their experience and knowledge on relevant issues for rare disease patients such as developing basic, clinical and social research, timely access to orphan medicines, provision of care, information, patient registries and many other issues.

EURORDIS volunteer patient advocates are involved in many different aspects of our work including the following:

• Projects
• Internal Task Forces and committees
• Patients’ online communities
• Representing EURORDIS in EU high-level committees and in scientific committees of the European Medicines Agency (EMA)
• Representing EURORDIS in European NGOs, networks and working groups
• Voicing our organisation’s positions in international conferences
• Moderating Patients’ online communities

Irrespective of how much time each person is able to dedicate to EURORDIS’ activities, the volunteer patient advocates’ experience is invaluable to better understanding both the diversity of situations faced by people living with a rare disease and their families throughout Europe as well as the common challenges, needs, expectations and hopes.  

EURORDIS thanks each and every volunteer for the time and energy spent working collectively to improve the lives of people living with a rare disease as part of EURORDIS’ voice of rare disease patients in Europe.

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

Below are the main dedicated groups of people who volunteer for EURORDIS. As more and more volunteers continue to become involved, we look forward to recognising all of them publicly.