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My pNET zebra

My husband is a Zebra, not the actual animal but he has a pNET. A Pancreatic neuroendocrine tumour (pNET). In medicine, the term ‘zebra’ is… Continue reading My pNET zebra

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Raising awareness and compassion for Trimethylaminuria (TMAU)

Hi, my name is Crissan and I want to raise awareness for a metabolic condition called Trimethylaminuria. It all started after my 18th birthday. I… Continue reading Raising awareness and compassion for Trimethylaminuria (TMAU)

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Stereotypic movement dissorder

Hi mother of 7…my daughter who is now 14 was diagnosed properly at the age of 10 with stereotypic movement dissorder…before this she was diagnosed… Continue reading Stereotypic movement dissorder

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#FightingforMaya

My daughter, Maya, at the age of 9 was diagnosed with Atypical TPP1 Deficiency (aka SCAR7). SCAR7 is an atypical form of CLN2, which is… Continue reading #FightingforMaya

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Being a Rarity among Raes

I am a 33-year-old woman with a disease only 100 people have worldwide, I also have a disease that only has around 30,000 people affected.… Continue reading Being a Rarity among Raes

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It’s all rare! From Chronic uveitis to glaucoma to severe cholestasis

I’ve been living with rare disease since 2001 when I woke up on a school day and had my vision completely covered by one big… Continue reading It’s all rare! From Chronic uveitis to glaucoma to severe cholestasis

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Hi there!

My name is Jill and after 30yrs and twice as much doctors and specialists I found out I have Ehlers-Danlos syndrome. Its a connective tissue… Continue reading Hi there!

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My Ledderhose/Dupuytren’s Disease Story

MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was… Continue reading My Ledderhose/Dupuytren’s Disease Story

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IPF (Idiopathic Pulmonary Fibrosis)

My name is Colleen and I’m 53 and reside in Michigan. In early 2016, I was having difficulty breathing and new I had to get… Continue reading IPF (Idiopathic Pulmonary Fibrosis)

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