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My life, my days

My name is Helga, I’m 35 years and I have EDS (Ehlers-Danlos Syndrome) hipermobility type. I found it two years ago when my body started… Continue reading My life, my days

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Please Help Baby Chiko (Biliary Atresia Patient)

We are Gino Lino J. Gumban and Carol Jeanette V. Gumban, parents of 2-year old Haley Ariela and 1-year old Marcus Paul, fondly called ‘Baby… Continue reading Please Help Baby Chiko (Biliary Atresia Patient)

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Maisie Marsh – PYRUVATE KINASE DEFICIENCY

Hi. My name is Emma, my daughter Maisie has a very rare blood disorder called Pyruvate Kinase Deficienency. Maisie is the 40th person in the… Continue reading Maisie Marsh – PYRUVATE KINASE DEFICIENCY

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Living with PVNS

I have a tumor called Pigmented Villonodular Synovitis or PVNS for short. Is a very rare, random, aggressive tumor that occurs in joints. Mostly in… Continue reading Living with PVNS

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Hereditary Heamorrhagic Telangiectasia / osler webber rendu

Traceys story: In 2005 when our daughter (Jessica) was 7 years old when she collapsed at school. She had complained of a headache to her… Continue reading Hereditary Heamorrhagic Telangiectasia / osler webber rendu

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Hereditary Heamorrhagic Telangiectasia / osler webber rendu

Traceys story: In 2005 when our daughter (Jessica) was 7 years old when she collapsed at school. She had complained of a headache to her… Continue reading Hereditary Heamorrhagic Telangiectasia / osler webber rendu

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Sphincter of oddi dysfunction

After having my gallbladder removed in Feb 2014 my symptoms got worse. I was then diagnosed with sod. My body cannot cope with the bile… Continue reading Sphincter of oddi dysfunction

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More than just flexible

I am very lucky that my case is considered mild. I’m able to live a very full and active life that I share with my… Continue reading More than just flexible

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Our Barth Journey

My first son, Nathaniel, was born September 9, 2002. He appeared very healthy and we couldn’t wait to get him home. At Nate’s one-week doctor… Continue reading Our Barth Journey

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