• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Viral rare disease video with a focus on EB

This year's Rare Disease Day video focused on supporting hands and featured a young woman with EB.

The theme for this year's Rare Disease Day on 28th of February was 'day by day, hand in hand'. EURORDIS produced a beautiful video on this theme, using hand shadows to depict the importance of working together to support those with rare diseases. Since its launch, it has been watched over a million times on Facebook!

The video features 24-year-old Beatrice from Rome, who has EB. Beatrice has many struggles in life but remains full of determination: "Now my main occupation is shooting, and I'm training to be able to participate in the upcoming Paralympics. I do not know how long my life will be but I will not let the disease break me down and I will make the best use of all the time I have left." We congratulate Beatrice on her role in this video and wish her the best of luck in her Paralympic goals!

Avril Kennan, DEBRA Ireland and DEBRA International

Screenshot of a video, showing a hand shadow

Official video for RDD 2015