Skip Navigation

Governance

In this section, you can learn more about how the EPDA is governed, funded and much more. The EPDA is a registered AISBL in Belgium and a charity registered in England and Wales (1163211).

Our Board

You can meet the members of the Board here.

Board responsibilities

All elected officers are volunteers and their positions are honorary. Together, they have a joint responsibility:     

  • to the EPDA member organisations for the management of the EPDA 
  • to continue to promote and enhance the ethos of the EPDA.

The President

The EPDA President must have been an existing Board member for at least three years in order to be appointed.

He/she is responsible for:

  • collaborating with the Director General to enable and ensure that the strategic direction, agreed by the Board, continues to enhance the EPDA ethos;
  • being a member of the EPDA Executive Committee, appointed by the Board;
  • enabling the EPDA members to be represented and able to participate in the organisation’s work programme, should they wish;
  • chairing the Annual General Meeting; 
  • representing the EPDA, together with the Director General and other Team members, at relevant major European and international events.

The Vice-President

The EPDA Vice-President must have been an existing Board member for at least three years in order to be appointed.

He/she is responsible for:

  • deputising during the President’s absence with regards to the EPDA activities (as listed above);
  • enabling all Board members to fulfill their roles in supporting the Team;
  • being a member of the EPDA Executive committee, appointed by the Board.

The EPDA’s Executive Committee

The Executive Committee (EXCOM) is made up of the President, Vice-President, Treasurer and Director-General (DG).

They will meet as and when the members believe it is necessary.

The purpose of their meetings is to:

  • provide support and guidance to the DG and the Team;
  • review any political and sensitive issues before presenting them for discussion to the full Board;
  • review the Treasurer’s report before it is circulated to the Board and to the members AGM;
  • offer advice in relation to streamlining workload as and when necessary, given the limited number and time of Board meetings.

It should be noted that the EXCOM provides guidance and support and is in no way a decision-making body – this is the Board.

What does the Board do? 

  • It represents the agreed ethos, aims and objectives of the EPDA at a global level. 
  • It is responsible for ensuring the goverance of the EPDA is maintained and reviewed regularly. 
  • It provides Parkinson’s expertise to a variety of organisations, including the European Medicines Agency (EMA).
  • It acts as ambassadors, advocating for positive, proactive dialogue and partnership between all the EPDA stakeholders, with the goal of improving the lives of 1.2 million people with Parkinson’s and their families across Europe.
  • Over the course of one year, Board members should be able to provide a minimum of 12 days of work for the EPDA, free of charge. These 12 days will be allocated as follows: 
    • attendance of two face-to-face Board meetings in February and July (two days)
    • joining two Board conference calls (one day in total)
    • attendance of one annual Members' Meeting and General Assembly (two days, usually in November)
    • time to review papers, e-mails and other documents, as well as to respond to any questions and to provide input to the Board and the Team (three days)
    • participating in other support activities, such as attending ad-hoc meetings, joining conference calls or representing the EPDA at important events if required (two days)
    • heading up the implementation of one of the EPDA's strategy pillars (two days).

In light of their additional responsibilities, it is expected that the EPDA President and Vice-President will have to provide up to five days of work per year, in addition to the above.
It is paramount that Board members attend the face-to-face Board meetings, as well as the General Assembly, and that they ensure their active presence and collaboration where possible.

Board nominations and election criteria

The EPDA is a highly respected and well-known European umbrella organisation. We are committed and energetic and, therefore, require a committed and energetic Board. We welcome nominations for potential candidates from enthusiastic people who are familiar with the EPDA and have participated in our work.

Duration

Board members are elected by the General Assembly for a three-year term and may be re-elected for one further term of office.

Verification Task Force

In order to select potential EPDA Board nominees, the existing Board must appoint a Verification Task Force (VTF).

The VTF will be made up of 5+1 (five plus one) representatives:

  • 2 (two) from the current Board, 1 (one) of which should be a person with Parkinson’s
  • 3 (three) members from the Member Organisations 
  • the Director General, who will have no power to vote but will be responsible for the management of the VTF.

The existing Board

It is the existing Board’s responsibility to:

  • confirm that the EPDA budget can support the full participation of the proposed number of Board members
  • strive for the widest possible geographic representation by its Board members
  • submit successful nominations to the General Assembly for ratification by the delegates.

Nominees must:

  • be enthusiastic and committed individuals who are familiar with and support the EPDA’s work 
  • understand the importance of the EPDA's aims and objectives, and commit to furthering these during their term of office for the benefit of the members and those individuals that they represent
  • be either a person with Parkinson’s, carer, patient organisation representative or healthcare professional
  • reflect the geographic spread of the EPDA
  • have been actively involved in pursuing their respective organisation’s initiatives, achievements and goals
  • confirm that the national organisation they may represent has fully paid its EPDA membership fees in the current year and for the last two years
  • participate in Board meetings as an observer (in the year of the election).

Nominees need to:

  • have the ability to work and communicate well in English
  • demonstrate good communication skills with a variety of people from different cultural backgrounds
  • be a good team player and appreciate the importance of partnership and working together
  • act as an ambassador and advocate for the EPDA
  • have the willingness to accept and handle responsibility within the Board structure, if required
  • show motivation and commitment
  • have a sense of humour
  • be available to attend EPDA meetings in person, if required
  • be willing to devote the time required to participate in EPDA meetings
  • have flexible working arrangements and be able to fit in mid-week meetings and conference calls
  • provide an up-to-date CV and photograph.

Board mandate

At the 2012 General Assembly, the General Assembly voted unanimously that, in order to safeguard the continuation of the EPDA and its aims and objectives, the Board Mandate should be linked to the Board nominations and Verification Task Force criteria as follows.

Board members are to be:

  • elected for a term of three years
  • with one further term of office
  • commencing 2014.

Statutes

Belgium AISBL Statutes

The European Parkinson's Disease Association (EPDA) is a charitable organisation registered in Bruxelles (Numéro de l'association: 8727/2000, No. d'entreprise: 465299201) and governed by the Belgian law of 25 October 1919, modified by the Law of 6 December 1954.

UK Statutes

The European Parkinson's Disease Association (EPDA) is a charitable organisation registered in England and Wales (registered Charity Number 1163211). Constitution of a Charitable Incorporated Organisation with voting members other than its charity trustees. Date of constitution (last amended): 19 August 2015

 

Sources of funding

The EPDA receives on average approximately €29,000 a year from its membership fees. The only other form of funding we currently receive is from sponsorship with the treatment industry (along with a small amount from EPDA fundraising activities).

Our partners are companies and organisations of high standing and reputation, all of whom agree with the EPDA’s overall strategic direction and help support the integrity of the organisation. The EPDA has adopted the EMA Code of Practice, and partnership is established on shared interest, transparency, trust and mutual benefit.

For more information, please contact lizzie@epda.eu.com.

EPDA income received 2019

EPDA industry related income 2019

EPDA other income 2019

Financial reports

The EPDA prides itself on being a transparent organisation. Here, our audited accounts can be viewed as far back as 2004. 

Note: PDI (Parkinson’s Disease International Ltd) was a UK-registered company that was closed in 2011.

Download our financial reports below.

Back to top