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
 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases