The shock of my life

Hello, my name is Joshua. For 13 years of my life I thought I was a normal kid. Playing games, going to after school clubs,… Continue reading The shock of my life

Read full story

Caring For my pku son

My son Noah got diagnosed with a rare genetic disorder called phenylketonuria (pku) when he was 9 days old. It came up after he had… Continue reading Caring For my pku son

Read full story

Luchando contra la luz

Hola! Soy Luca de Argentina con 23 meses. Naci el 16 de septiembre de 2020 al dia de vida entre a cuidados intensivos por una… Continue reading Luchando contra la luz

Read full story

Places We Take Ourselves

Intro I live with a rare disease, PIK3CA Related Overgrowth Spectrum. Technically it’s just overgrowth, but for me it’s had a knock on effect on… Continue reading Places We Take Ourselves

Read full story

30 years PanHypopituitarism

I was diagnosed with a Craniopharyngioma tumour on the Pituitary Gland in 1991, had surgery in 1992 however my Pituitary Gland was also removed! I… Continue reading 30 years PanHypopituitarism

Read full story

what does nutcracker syndrome know, what is impossible?

I’m turning 21 this year. I was born in the eighth month, with a series of complications, where the doctor told my mother, “Mother, your… Continue reading what does nutcracker syndrome know, what is impossible?

Read full story

Living with IIH

On December 21, 2021, I was diagnosed with Pseudotumor cerebri. This condition is also known as Idiopathic Intracranial Hypertension (IIH) and it shows signs and… Continue reading Living with IIH

Read full story

Rui’s CDA1 Story

Rui was born on 20th of February 2022 with severe jaundice, enlarged spleen and enlarged liver. We spent 20 days on the special care baby… Continue reading Rui’s CDA1 Story

Read full story

My journey

Spotted lessons on my neck at 12 we went to my doctor. Referred me to a dermatologist who took biopsy and sent to America for… Continue reading My journey

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!