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H F I is not a childhood disease anymore

I am the oldest person I know of who has HFI. Hereditary fructose intolerance was once thought to be a childhood disease because all known… Continue reading H F I is not a childhood disease anymore

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My experience with hATTR

I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR… Continue reading My experience with hATTR

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What else could go wrong

Well my story began in 2010 when I began having severe back pain and my lower limbs began giving me issues I ignored for awhile… Continue reading What else could go wrong

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Treacher Collins Syndrome

I was born with a craniofacial anomaly called Treacher Collins Syndrome. My characteristics are small, undeveloped ears, small jaw and airway and down slighting eyes.… Continue reading Treacher Collins Syndrome

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Hopeful for a Cure – My Experience with hATTR

My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10-years old when I was first exposed to the devastating effects of… Continue reading Hopeful for a Cure – My Experience with hATTR

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Willmans she ome

Hello my name is Charlotte I got willmans syndrome 23 I got willmans

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Still Undiagnosed

Since 2013, I have had many problems and remain undiagnosed. My liver levels go up extremely high intermittently, I suffer from extreme fatigue, and today… Continue reading Still Undiagnosed

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Figured myself out

I was born and diagnosed with cerebral palsy. It wasn’t until last year that I demanded to be put on a dopa drug. It amazingly… Continue reading Figured myself out

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My Life With Ehlers Danlos Syndrome

Hello my name is Chloe and i am seventeen years old and i have Ehlers Danlos Syndrome (EDS) EDS is a rare genetic connective tissue… Continue reading My Life With Ehlers Danlos Syndrome

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