#1 every approach is different - rare disease day

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#1 Every approach is different

Ø The Colosseum lightening costs were covered by the body providing the normal lightening. There is a Committee that decides on the requests submitted.

Ø The Leaning Tower lightening was funded by the EU Commission following the request of ReConnect ERN( Leader is in Pisa)

Ø For the other monuments the cost was covered by Municipalities

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#2 Work with patient organisations

Ø Start the whole process as soon as possible, illuminating a building can take quite a long time depending on the number of bodies involved

Ø Identify the bodies that “own” the building/monument, but also who is responsible for the electricity and lightening costs

Ø Coordinate with other patient organisations to illuminate landmarks and monuments in different cities.

Ø Prepare a communication strategy on social media. This will strengthen the thread of illuminated national monuments and buildings.

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#3 We can create an impact

Ø Every single picture is fantastic, but organising a professional to take some nice pictures is an added value

Ø Engage family, friends and your community to share them on their social media profiles

Ø Remember to send them to EURORDIS!!!!

rarediseaseday.org

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Thank you for your attention!

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