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May 2012

2011 Activity Report is now available online


The Activity Report and the Financial Report for 2011 were adopted by the General Assembly, which met in Brussels on May 23.

The Activity Report lists and develops in detail EURORDIS’ priority objectives and achievements for the previous year. These include: project development, committee and conference activity, on-going partnerships, governance structures and staff appointments. The report also includes a snapshot of last year’s revenue and expenses, a list of members and supporters, as well as the Work Programme for 2012.

The Financial Report presents a breakdown of revenues by source and of expenses by type, details the organisation’s assets and liabilities and includes the auditor’s annual financial statement.

The Assembly also approved the 2012 Action Plan and 2012 Budget and voted for five vacant positions in the Board of Directors.

2012.05.24_Eurordis_hd-049_2.jpgOf the seven candidates running for office, the following patient representatives were elected to join the Board of EURORDIS for the first time:

• Geske Wehr, Selbsthilfe Ichthyose E.V., Germany

• Vlasta Zmazek, Croatian Society for Rare Diseases, Croatia

• Simona Bellagambi, UNIAMO, Italy

The following patient representatives were re-elected for another 3-year mandate:

• Béatrice de Montleau, AFM –Téléthon, France

• Avril Daly, Genetic and Rare Disorders Organisation, Ireland

Birthe Byskov Holm has taken over the seat of Rare Disorders Denmark in replacement of Torben Grønnebæk who sadly passed away last February.

The Board of Officers is elected annually by the Board of Directors following the General Assembly. This year saw the introduction of a new position within the BoO, that of the Deputy General Secretary. Our new Board of Officers is thus currently as follows:

    * President: Terkel Andersen, Danish Haemophilia Society, Denmark
    * Vice President: Avril Daly, Genetic & Rare Disorders Organisation, Ireland
    * General Secretary: Christel Nourissier, Prader Willi France, France
    * Deputy General Secretary: John Dart, DEBRA International, UK
    * Treasurer: Dimitrios Synodinos, PESPA – Greek Alliance for Rare Diseases, Greece
    * Officer: Dorica Dan, Romanian Prader Willi Association, Romania

We are very happy to have such a strong and committed team that will steer our organisation during the next few years!

To download the Activity Report and Financial Report click here

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