Filters

Misophonia

My daughter is 14. We’ve always known her to be very intelligent, sensitive and mature in many ways. What we didn’t know was the disorder waiting… Continue reading Misophonia

Read full story

Mio Fratello ( my brother) by Giulio Base

When Edoardo was one year old we saw that something was wrong. He could not walk and when he started walking at 18 months, he… Continue reading Mio Fratello ( my brother) by Giulio Base

Read full story

But he doesn’t look disabled.

Nicholas was born with Phelan-McDermid Syndrome, but we didn’t realise he had that condition until he was diagnosed at 3 years of age. After failing… Continue reading But he doesn’t look disabled.

Read full story

My Daughter, Lexi, Has Bronchiolitis Obliterans

My daughter is 6, and was diagnosed with bronchiolitis obliterans in December 2017. She has had pneumonia since January 2017, and cannot beat the infection… Continue reading My Daughter, Lexi, Has Bronchiolitis Obliterans

Read full story

My Journey with Addison’s

In the fall of 2007, shortly after I began third grade, I grew pretty sick. I was much more tired than usual, and even ended… Continue reading My Journey with Addison’s

Read full story

Alannahs Diary

Hello, on behalf of my 19 month old daughter Alannah I am sharing her story.  On the 6th of February 2017 Alannah was rushed into hospital… Continue reading Alannahs Diary

Read full story

Il Nostro piedino magico

Silvia ha 2 anni , la sua malformazione si chiama macrodattilia con sindattilia al secondo e terzo dito , e la macrodattilia  prende il piede sinistro… Continue reading Il Nostro piedino magico

Read full story

Macrodactyly

My name is Federica and I live in Italy with my our 2 children, manuel 11 and riccardo  9 years old, respectively. Manuel have  a… Continue reading Macrodactyly

Read full story

Optic Nerve Hypoplasia and Septo Optic Dysplasia

My beautiful daughter- Piper, has Optic Nerve Hypoplasia, and recently she was also diagnosed with Septo Optic dysplasia. These rare diseases deem her legally blind – a tough… Continue reading Optic Nerve Hypoplasia and Septo Optic Dysplasia

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!