Show your care, show your rare

By Irina, Mucopolysaccharidosis typeI., Russian Federation, February 7, 2019

Together we can everything

My marvelous son Arseniy. He is 10 years old now. Diagnosed at the age of 9 months. Began our treatment at the age of 3.

We paint our faces with the Rare Disease Day logo colours to show our support for the rare disease community.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.