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Eurordis RareTogether Knowledge Base | Capacity Building for Networks of Rare Disease Patient Organisations

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Advocacy at a European level. 8 basic steps to setting up a European Federation. Is there a best country to register a Federation? Look for other national groups. Pro and Contra European Federations. Code of Good Practice. Cross border tax relief. European Commission Call for proposals. Financial support by Commercial Companies. Read more about our aims. 8211; your aims! Advocacy at a European level.

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Eurordis RareTogether Knowledge Base | Capacity Building for Networks of Rare Disease Patient Organisations | raretogether.eurordis.org Reviews

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Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Advocacy at a European level. 8 basic steps to setting up a European Federation. Is there a best country to register a Federation? Look for other national groups. Pro and Contra European Federations. Code of Good Practice. Cross border tax relief. European Commission Call for proposals. Financial support by Commercial Companies. Read more about our aims. 8211; your aims! Advocacy at a European level.

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2 mentoring topics

3 news

4 member log in

5 become a member

6 advocacy and communication

7 advocacy tools

8 blogs

9 language issues

10 rare disease communities

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skip to content,mentoring topics,news,member log in,become a member,advocacy and communication,advocacy tools,blogs,language issues,rare disease communities,rare disease day,surveys,websites,building a federation,action plans,creating the structure,rare

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Eurordis RareTogether Knowledge Base | Capacity Building for Networks of Rare Disease Patient Organisations | raretogether.eurordis.org Reviews

https://raretogether.eurordis.org

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Advocacy at a European level. 8 basic steps to setting up a European Federation. Is there a best country to register a Federation? Look for other national groups. Pro and Contra European Federations. Code of Good Practice. Cross border tax relief. European Commission Call for proposals. Financial support by Commercial Companies. Read more about our aims. 8211; your aims! Advocacy at a European level.

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raretogether.eurordis.org

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Language issues | Eurordis RareTogether Knowledge Base

http://raretogether.eurordis.org/category/mentoring-topics/advocacy-communication/language-issues

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Employees & Volunteers →. 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 is using a translation service. In the Patient communities. What is Google Translate. Google Translate is a free translation service that provides...

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News | Eurordis RareTogether Knowledge Base

http://raretogether.eurordis.org/category/news

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Aniridia Europe, the European Federation of Aniridia Associations, was formally established in September 2011, to promote research, exchange of knowledge and empower patients. In November 2012, Aniridia Europe’s Scientific Committee met for the first time in Mestre (Venice). five doctors … Read More. Article of the week. Council of European Federations. Article of the week. Cross Border Health Care.

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Membership | Eurordis RareTogether Knowledge Base

http://raretogether.eurordis.org/category/mentoring-topics/building-a-federation/membership

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. People who interact with one another, accept obligations as members of the (pan-European) group, and share a common identity. They define and drive the group they are a part of. How many members does a group need? Is a group more “representative” with more members? Are members family, people with the disease, representatives, national organisations, regional organisations? Who is a member. There ma...

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Advocacy tools | Eurordis RareTogether Knowledge Base

http://raretogether.eurordis.org/category/mentoring-topics/advocacy-communication/advocacy-tools

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. In advocacy tools you’ll find information that can help you in your local, national or international advocacy activities. Advocacy tools Eurobarometer survey. Eurobarometer survey “European Awareness of Rare Diseases ” shows strong public support for rare disease patients Read More. Talk to your Parliamentarian – Come to Brussels! Patients meeting EU Parliament – first step. Article of the week.

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Surveys | Eurordis RareTogether Knowledge Base

http://raretogether.eurordis.org/category/mentoring-topics/advocacy-communication/surveys

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Membership – is it organisational or individual? Good international practices – European Medecines Agency →. 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. The following are the results of a survey conducted among 18 participants of ECHDO. Download the results ici. If there is no cost,...

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Eurordis RareTogether Knowledge Base | Capacity Building for Networks of Rare Disease Patient Organisations

Eurordis RareTogether Knowledge Base. Capacity Building for Networks of Rare Disease Patient Organisations. Advocacy at a European level. 8 basic steps to setting up a European Federation. Is there a best country to register a Federation? Look for other national groups. Pro and Contra European Federations. Code of Good Practice. Cross border tax relief. European Commission Call for proposals. Financial support by Commercial Companies. Read more about our aims. 8211; your aims! Advocacy at a European level.

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