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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.
Advocacy & Communication
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
Communications advice for new groups
The toolkit provides ideas, advice and practical tips to help you in communicating with the wider community, and examples of how other Patient Groups have gone about recruiting new members, planning and delivering local initiatives, supporting other local Patient Groups … Read More
Fundraising blogs
Our own Nick Sireau from Alkaptonuria (AKU) UK has a great blog, lots to do with fundraising, at http://akurarediseaseguide.wordpress.com/category/fundraising/ Any questions, please email him directly or leave him comments.
Language Issues
The lack of a common language is one of the main problems that European Federations face in their day to day work and networking activities. Not everyone we want to communicate with speaks English… One way of solving the problem … Read More
Posted in Advocacy & Communication, Language issues
Online Surveys
A quick and easy way to find out what patient representatives across Europe think of a specific topic is the use of an online survey tool, such as Survey Monkey Example: The following are the results of a survey conducted … Read More
Posted in Advocacy & Communication, Surveys
Tagged surveys
Rare Disease Communities
The Rare Disease Communities project is part of the strategic partnership signed in 2009 between Eurordis, the European Rare Disease Organization and NORD, the National Organization for Rare Disorders. The communities are guaranteed by Eurordis and NORD with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests. Read More
Rare Disease Day
European Federations (EF) are strongly encouraged to participate in the annual Rare Disease Day www.rarediseaseday.org At the advocacy level, the goal in Europe is to get Rare Diseases higher in the public health and research agendas, and to get more … Read More
Posted in Advocacy & Communication, Rare Disease Day
Tagged advocacy, awareness, Rare Disease Day
Some recommendations for websites & templates
OIFE is a European Federation with 18 European and 6 international member organisations. We were founded in 1993 and our first President set up a website many years ago (www.oife.org) and is managing it as volunteer webmaster. Now our Board … Read More
Posted in Websites