My daughter had pearson syndrome

Our 3-year-old daughter Eliana received the diagnosis not long ago that made us sink into the ground beneath our feet… Because she would never be… Continue reading My daughter had pearson syndrome

Read full story

My aplastic anemia story

In august 2020 I started developing bruises all over my body, that would not heal for weeks, got blood tests done and was diagnosed with… Continue reading My aplastic anemia story

Read full story

Mein neuer Reisebegleiter: Paranodopathie

Ich bin Wiebke, 35 Jahre alt, und lebe seit Oktober 2020 mit einer sehr seltenen neurologischen Autoimmunerkrankung namens Paranodopathie. Innerhalb eines halben Jahres wurde ich… Continue reading Mein neuer Reisebegleiter: Paranodopathie

Read full story

Let’s see what happens now.

My story has been written as a blog for sometime now. This is the title page ☺ Four and a half years ago, in May… Continue reading Let’s see what happens now.

Read full story

Day by day.

My name is Eva . I am from Spain. After many years without a diagnosis and fighting with the unknown in 2020 I was diagnosed… Continue reading Day by day.

Read full story

His fight is my fight

It was the summer of 2017 when my son started developing strange symptoms. We took him to the doctor but she misdiagnosed him for two… Continue reading His fight is my fight

Read full story

Two rare babies

Our story began in feb 2016 when our baby boy was diagnosed with GA1 , we had never heard of GA1 despite our other 5… Continue reading Two rare babies

Read full story

The enemy in my body

It all started in June 2020. I had severe pain in my back… I had to vomit, had hiccups and kept falling over. The doctors… Continue reading The enemy in my body

Read full story

My Stepdaughter and both grandchildren suffer with XLH

My story begins with my stepdaughter Robyn who lives with X-linked hypophosphatemia (XLH) for short when she fell pregnant with Leo we were so delighted… Continue reading My Stepdaughter and both grandchildren suffer with XLH

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!