Activity reports, strategic approach and by-laws

2017 Activity Report and Financial Report

 

Activity Report 2017 

Financial Report 2017 

The annual Activity Report describes EURORDIS' goals, activities and achievements for the previous year. These include project developments, committee and conference activity, and forum involvement. The Activity Report also details the organisation’s revenues and expenses, governance structure, the implementation of audit recommendations, staff appointments, and includes a list of members and supporters. Finally, it contains the Workplan for the following year, including the Action Plan and Budget. 

The EURORDIS Activity Reports are available in English.

Activity Report 2016 

Activity Report 2015 

Activity Report 2014 

Activity Report 2013

Activity Report 2012

Activity Report 2011

Activity Report 2010

Activity Report 2009

Activity Report 2008

Activity Report 2007

 

Statutes

Statutes are the laws or regulations that govern the internal affairs of an organisation. EURORDIS has published its statutes on the site for your information.

EURORDIS is regularly asked by other NGOs to provide its statutes to help them enhance their own governance. Any organisation is free to do so, as long a previous agreement is sought, and EURORDIS acknowledged.

For permissions, contact: communication@eurordis.org

English:

 

Governance Procedures - Decision Making

 

Good governance procedures are in place to ensure democratic decision making and transparency of the management structures: the annual General Assembly, the Board of Directors and the Board of Officers.

The EURORDIS Board of Directors is made up of representatives of patient organisations, full members of EURORDIS, therefore negating the possibility of conflict of interest with Health Corporations.

A set of tools ensures the internal communication:

1. The Senior Manager of Relations with POs/Members regularly informs the members on specific issues and involves them via calls for contribution and volunteer recruitment - in the eNews, Member News or ad hoc mailing;

2. EURORDIS EPAC (European Public Affairs Committee) regularly communicates through an ad hoc mailing list in order to share information and experience, to provide feedback on meetings attended on behalf of EURORDIS, and to elaborate and adopt EURORDIS common positions on political/technical issues;

3. EURORDIS PAG (Policy Action Group) composed of patient representatives in the Commission Experts Groups, such as the Commission Expert Group on rare diseases (CEGRD), has regular exchange of information and meetings;

4. EURORDIS TAG (Therapeutic Action Group) has monthly Conference calls to exchange information between patient representatives involved in the Scientific Committees of the EMA and produce reports. In addition, the TAG and BoD have an annual meeting for exchange of information;

5. Information circulates between the European and national levels, mainly through the Council of National Alliances (CNA) and the Council of European Federations (CEF);

6. Website, eNews and Member news in 7 languages and EURORDIS Social Media. The eNews is available on a bi-weekly basis and is streamlined with the website content. Member News is available on a monthly basis. Social Media are updated daily. All three are available and disseminated to all stakeholders including EURORDIS members;

7. The staff meets once every two weeks to coordinate the daily work and on a monthly basis to jointly define Operations, Public Affairs, Financial Affairs and Editorial;

8. Conflicts are managed by the CEO and the BoO.

Page created: 19/08/2009
Page last updated: 16/05/2018
 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases