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The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
Governance
Board of Directors
The role of the Board of Directors is to provide leadership and oversight of the activities of the association. In both areas it will strive to represent the interests of members and the broader community. Read More
Posted in Board of directors, Governance
Tagged governance, patient organisation
Board of Directors – Description of function
Elements for a Board member Job Description Role To direct the organisation towards the realisation of its mission. To ensure that the organisation and its assets are effectively managed. Responsibilities Planning Participate in creating and reviewing strategic orientations. Approve, on … Read More
Posted in Board of directors, Governance
Tagged board, director, job description
By-laws
By-laws are the set of rules under which the organisation will operate. They typically include such items as (a) number of members, term length, nomination process, committees, and meetings; (b) fiscal year/accounting cycles, committees, and officers’ responsibilities; (c) methodologies, tools, … Read More
Posted in By-laws, Governance
Tagged by-laws, statutes
Employees & Volunteers
Volunteers are unique to non-profit organizations and are a vital resource in governance, administrative and service capacities. Non-profit organisation’s human resource policies must be fair, establish clear expectations and provide for meaningful and effective performance evaluation for both paid employees … Read More
Posted in Employees & Volunteers, Governance
Tagged not for profit, patient organisation
EURO HSP Statutes
EURO HSP STATUTES (Registered at the Prefecture de Police de Paris on 2010/07/21. Ref number W751205920 TITLE-AIM-SEAT Article 1 It is based, among the adherents to these statutes, an association governed by the law of 1 July 1901 and its … Read More
Finding volunteers
The UNV Online Volunteering service connects volunteers with organizations working for sustainable human development. Volunteers contribute their skills online to help organizations address development challenges. Organizations collaborate with online volunteers over the Internet to strengthen the impact of their development … Read More
Posted in Employees & Volunteers
General Assembly
The By-Laws of each organization must define the General Assembly and more specifically: – Duties and responsibilities of the General Assembly – Who can participate in the general assembly? (in general, the full members of the organization) – Proxy policy … Read More
Posted in General Assembly, Governance
Tagged European Federation, NGO, patient organisation
Good international practices – European Medecines Agency
EMA criteria One of the best examples of good international practices certainly are the European Medecines Agency’s Criteria to be fulfilled by Patients’ and Consumers’ Organisations involved in EMA Activities: The organisations should be established at European Union (EU) level, and … Read More
Posted in Good international practices, Governance
Tagged EMA, European Federation, good practice
Mission statement
A Mission statement describes the organization’s: Values Target Audience Core Services Unique Attributes A mission statement is a succinct statement that conveys your organization’s reason for being. Coming up with an effective mission statement is worth the time and effort. … Read More
Posted in Action Plans, By-laws, Good international practices, Statutes
Statutes
The statutes (or articles of incorporation, charters, constitutions, articles of association, etc.) are established when the organization files for incorporation with the appropriate state agency. A Board of Directors gets its authority from the articles. This governing document specifies, for … Read More
Posted in Governance, Statutes
Tagged bylaws, not for profit statutes