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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.
Author Archives: admin
8 basic steps to setting up a European Federation
Based on the Arrythmia Alliance toolkit 1. Find your leaders! 2. Establish your mission 3. Register as a Charity/ not for profit organisation 4. Begin fundraising 5. Begin outreach: hold patient education meetings 6. Develop a website 7. Raise awareness … Read More
Action Plans
Actions plans are the specific means by which objectives are accomplished. They incorporate 5 factors: 1. The specific step or activity/action. 2. The person who will be held responsible for seeing that each step or action is completed. (Quite often … Read More
Posted in Action Plans, Building a Federation
Tagged action plan, European Federation
Advocacy
Advocacy at EU level
Efficient lobbying is based on the knowledge of the structure, procedures, and the decision-making processes within political systems. Therefore, in order to influence the process, it is necessary to understand how procedures work. It is particularly important to understand the co-decision procedure, not only because it is the most common, but also because it offers numerous possibilities for interest groups to influence the European Union’s decisions. Lobbying efforts by interest groups, such as patient organisations, can be effective if you know the where, how and when.
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Posted in Advocacy & Communication, Advocacy at a European level
Tagged advocacay, Europe, rare diseases
Advocacy tools – Eurobarometer survey
Eurobarometer survey “European Awareness of Rare Diseases ” shows strong public support for rare disease patients Read More
Posted in Advocacy & Communication, Advocacy tools
Tagged advocacy tool
Blogs
Are usually maintained with commentary, descriptions, or other material (like graphics or video). Blogs provide commentary or news – health is a common blog subject; others function as more personal online diaries. A typical blog combines text, images, and links … Read More
Posted in Advocacy & Communication, Blogs
Tagged blogs, rare diseases
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
Books on philanthropy (European and other)
At http://www.nefic.org/content/news you can download Philanthropy in Europe Philanthropy in Europe has been largely neglected. A book, Philanthropy in Europe – a rich past, a promising future, edited by Norine MacDonald and Luc Tayart de Borms, will start to fill … Read More
Posted in Resources
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
Code of Good Practice
The valuable and serious work of patients’ groups and the service they provide needs to be recognised, valued and supported. However, most groups are struggling to find sufficient, diversified resources, to fulfil their mission and objectives and remain independent, whether … Read More
Posted in Code of Good Practice, Funding
Tagged good practices, patient groups