Filters

My son Sam – the original Donnai – Barrow boy!

My son Sam was born in November 1986 with a long list of symptoms which singly weren’t that unusual but had never (as far as… Continue reading My son Sam – the original Donnai – Barrow boy!

Read full story

Living life to the fullest with RP

I am 40 years old and was officially diagnosed with relapsing polychondritis about 20 years ago. I received my diagnosis from my ENT by him… Continue reading Living life to the fullest with RP

Read full story

Carolis disease

Hello, My name is Leona (45 years old). Last year I was diagnosed with a rare congenital liver disease called Caroli’s disease. I have suffered… Continue reading Carolis disease

Read full story

Living with Pheochromocytoma

Today is Rare Disease Day. In December 2016, I was diagnosed with pheochromocytoma (pheo). Pheo is a rare tumor that usually develops in cells of… Continue reading Living with Pheochromocytoma

Read full story

Solar Urticaria

I hsve Solar Urticaria This very rare disease inpacts 1 in 300,000 people. It causes severe hives and joint swelling within only seconds of UV… Continue reading Solar Urticaria

Read full story

My personal fight against ATAXIA

My Name is Christopher John DeHaven, and I would like to share my life and what I see going on in the world. This is… Continue reading My personal fight against ATAXIA

Read full story

Bartters Syndrome

I have Bartter Syndrome, a kidney problem thats inherited by recessive gene and low blood pressure, low potassium, low salt probably low magnesium.  Its diagnosed… Continue reading Bartters Syndrome

Read full story

Bartters Syndrome

I have Bartter Syndrome, a kidney problem thats inherited by recessive gene and low blood pressure, low potassium, low salt probably low magnesium.  Its diagnosed… Continue reading Bartters Syndrome

Read full story

Cmn-research

My daughter was born with cmn on the left side of her face covering 30% of her left eye and 25-30% of her face. There… Continue reading Cmn-research

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!