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Feb. 4, 2016

TOPIC: Advocacy, Events, Featured News, Get Involved, Patients & Members

Rare Disease Day Video for 2016 Launched

Posted by Christina Jensen
rdd-2016-global

On Wednesday, EURORDIS released the official, global video for 2016 Rare Disease Day. The video focuses on the special moments in the lives of people living with a rare disease. EURORDIS says, “everybody experiences those special moments with their relatives, children, friends and colleagues. For people living with or affected by a rare disease, the emotion during these moments can be very strong as they leave behind the challenges they face on a daily basis.”

The video features Elisa, who is living with Williams syndrome, and her parents. We enjoy a look into one of Elisa’s special moments with her family and remember that a rare disease is not what defines a person, it is what makes life’s little moments special to them.

This year, the video was translated into over 20 languages, making a huge impact for the rare disease community. If the video is not yet translated in your language, you can send EURORDIS the translation at rarediseaseday@eurordis.org and they will embed the text as subtitles in the video for you.

Read more about Elisa here and please enjoy the full video below. Please remember to share with your network to help make the voices of rare diseases heard for Rare Disease Day!

 

 

3 Responses to “Rare Disease Day Video for 2016 Launched”

  1. Ginger White says:

    Oh! so very powerful.
    Brought tears to my eyes.
    I am a patient with a very rare kidney disorder – less than 60 ever diagnosed.

  2. Susan Haack says:

    Thank you for the beautiful video. I will share.

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