Volunteering for EURORDIS

Learn about our volunteers: Who are they? What is their role? How do they contribute? Read the EURORDIS Volunteer Charter.

 

 

EURORDIS volunteersEURORDIS 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.

 

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

read more...
 

Therapeutic Action Group (TAG)

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

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Policy Action Group (PAG)

The EURORDIS Policy Action Group (PAG) encompasses the 8 patients’ representatives who are nominated on the Commission Experts Group on Rare Diseases (former EUCERD – European Committee of Experts on Rare Diseases) as well as two observers from EURORDIS.

read more...
 

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

read more...
 

Social Policy Advisory Group

The Social Policy Advisory Group (SPAG) closely follows EURORDIS’ activities to promote the integration of rare diseases into social services and social policy.

read more...
 

RD-Connect Joint Patient Advisory Council (RD-PAC)

RD-Connect is a global infrastructure that links data from rare disease research projects in a central resource for researchers across the world

read more...
 

RARE-Bestpractices Patient Advisory Council

A Patient Advisory Council has been established to ensure patient representation in the RARE-Bestpractices project

read more...
 

RareConnect Moderators

RareConnect.org is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated

read more...
 
 

 

EURORDIS’ Volunteer engagement is guided and regulated by the Charter of the EURORDIS Volunteers which has been adopted by the EURORDIS General Assembly on 8 May 2014 in Berlin.



EURORDIS VOLUNTEER CHARTER

EURORDIS

The EURORDIS volunteers are engaged in various activities to achieve the same objective, i.e. help EURORDIS fulfil its mission to build a strong pan-European community of rare disease patients and fight against the impact of rare diseases on peoples’ lives.

Volunteers contribute their time, experience and commitment to EURORDIS to carry out different tasks, using their knowledge and best skills. 

Volunteers can: 

  • Represent EURORDIS in international/ European and/or national committees 
  • Represent EURORDIS in international/European and/or national conferences
  • Participate in internal task forces, working groups, committees, advisory groups or panels of experts 
  • Be involved in project steering committees, in conferences’ programmes and/or organising committees 
  • Take an active part in activities such as moderating online rare disease patient communities 
  • Provide translations of documents and other activities 
 
EURORDIS recognises and appreciates the work and dedication of its volunteers. The diversity of their competences, rare diseases and countries of origin all play a very important role and constitute a strength of the organisation. 
 
EURORDIS volunteers are not paid or financially compensated for their contribution. They are reimbursed for expenses directly incurred in the scope of their activity in a fair and timely manner according to the internal rules & procedures (a copy of which is issued to all parties), and covered by EURORDIS’ insurance when travelling for their mission. 

EURORDIS volunteers are committed to:

  • Adhering to the core values as adopted by the members of EURORDIS:
    • Mutual respect
    • Solidarity and mutual support
    • Equity and social justice
  • Respecting the Terms of Reference of their particular mission; each EURORDIS activity involving volunteers has Terms of Reference adopted by EURORDIS governance and accepted by each volunteer
  • Fulfilling their mission based on the core competences upon which they have been nominated:
    • Voluntarism
    • Professionalism
    • Capacity to ensure regular communication with different relevant stakeholders and listen to opinions and requests
    • Capacity to report regularly on their activities
    • Belief in progress
  • Reporting to their contact staff person on policy issues and/or delicate matters that require an official position of EURORDIS in line with the organisation’s governance practices
  • Contributing to developing and raising awareness of EURORDIS and the rare disease patients community in accordance with EURORDIS policy and objectives

EURORDIS is committed to:

  • Ensuring that the vision, mission and core values of the organisation are respected
  • Providing the volunteers with the necessary tools and staff support to fulfil their mission
  • Providing the volunteers with the necessary training and guidance to empower them to carry out their tasks
  • Ensuring regular communication with the volunteers, and listening to their opinions and requests
  • Valuing, politically and economically, the contribution of volunteers in the fulfilment of their mission
 
EURORDIS volunteers work closely with the staff as well with each other, providing support and team spirit. This mutually supportive team spirit includes the Board of Directors. Their common aim is to break the isolation of rare disease patients and their families.
 
Volunteers raise awareness of rare disease patients’ needs amongst the general public and policy-makers and advocate for timely access to diagnosis, adequate care, treatment and adapted services.

 

Download the EURORDIS Volunteers Charter as a PDF 

 

 
 
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases