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Byds

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27 days to go to raise awareness for Rare Disease Day 2013 and CADASIL.    Let’s represent CADASIL and the community.     Let us know what you plan to do on this special day!!!!!!!!!!!!!!!!!!!!!  Let all of us inform others what your plans are by responding to this post.  Remember this is a worldwide event. 

You don’t need to leave your house or work just recognize this special day by  

 Uploading a Video or Photo - Share a video or photo of your own or that of others living with a Rare Disease.  http://www.rarediseaseday.org/yourstory 

GET INVOLVED: 

http://www.rarediseaseday.org/article/get-involved

Rare Disease Day is open to everyone!

Individuals, patients, patient organisations, health professionals, researchers, drug developers, public health authorities - the more, the better!

As you’ll find out, there’s more than one way of getting involved. Let’s join our efforts to give hope to rare disease patients all over the world!

1. National Alliance

Do you want to organise an awareness-raising activity?
Do it by contacting your national alliance or country organiser.
More information about participating countries on Countries and regions

Not a patient organisation but you still want to organise an activity or simply help relay the message?
Sign up as a Friend of Rare Disease Day by adding your name to a growing list of supporters on the website.

Your country doesn't have a National Alliance or you are an international organisation? You can still get involved by contacting EURORDIS at rarediseaseday@eurordis.org.

2. Download the Rare Disease Day logo, the information pack and other communication material

We ask only that this logo be displayed in the spirit in which it was intended—as a non-commercial symbol of global partnership in the search for ways to improve the lives of those affected by rare diseases.

3. Tell your story by uploading a photo and/or video on to this website

4. Join & Raise your Hands

to show your Solidarity with rare disease patients around the world! Take a photo and send it in! All the photos will be displayed on this website.

5. Particpate in the conversation on Rare Disease Day’s Social Media

facebook.com/rarediseaseday ‘Like’ the RDD Facebook page, view our timeline and participate in the conversation on Rare Disease Day

twitter.com/rarediseaseday Follow Rare Disease Day on Twitter (@rarediseaseday). Re-tweet us and use the hashtag #raredisease

youtube.com/rarediseaseday Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via rarediseaseday.org

flickr.com/photos/rarediseaseday Upload your photo on to the Rare Disease Day Photo Wall and add a comment in your own language

6. Ideas for supporting the campaign

Some easy ideas

·     Display posters, images or other awareness raising media such as ballons

·     Distribute stickers and flyers

·     Organise rare diseases events around topics paramount to patients

·     Organise a competitive event focused on rare diseases

·     Coordinate letter writing or email campaigns to local policy or national policy decision makers

·     Arrange to meet with local and national authorities

A bit more planning

·     Send a press release to the media

·     Award advocates of rare disease patient causes

·     Organise interviews with the media

·     Organise fund-raising events

·     Invite a VIP to endorse the Day

·     Implement a help line providing information about rare diseases

·     Organise a visit to a rare disease research lab by an Parliamentarian or Health Minister

Questions? Suggestions?

Contact us on rarediseaseday@eurordis.org For regular updates about the campaign sign up to our mailing list on this website

 

 


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CADASIL Together We Have Hope NonProfit Organization
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