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Neurofibromatosis: my diagnosis, not my definition

When Jesse was born, we did not know of the challenges he would face in his life. By the time he was 3 months old,… Continue reading Neurofibromatosis: my diagnosis, not my definition

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Inspiring Imogen

My pregnancy with my daughter was just like any other with morning sickness and cravings. It all changed at 36 weeks pregnant. I went for… Continue reading Inspiring Imogen

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Duputreyn’s Contracture

My name is Duncan from Scotland and I’m 50 years old. I live an active and healthy lifestyle and have dupuytren’s contracture (dc) in both… Continue reading Duputreyn’s Contracture

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Josie’s story-ARSACS

At the age of 5 we discovered that there was something different about the way Josie would walk or how she annunciated her words. Teachers… Continue reading Josie’s story-ARSACS

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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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