Advocacy & Communication
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.
Eurobarometer survey “European Awareness of Rare Diseases ” shows strong public support for rare disease patients Read More
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
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
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.
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
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
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
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
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