Activity reports, strategic approach and by-laws

2018 Activity Report and Financial Report

 

Activity Report 2018 

Financial Report 2018 

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 2017 

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:

 

By-laws

By-laws April 2019 with annexes

By-laws April 2019 French 

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: 10/10/2019
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases