Line’s Dream

Hello My Name is Line I’m 8 years old and I have RTS (Rubinstein-Taybi Syndrome) . I was diagnosed with RTS when I was 4… Continue reading Line’s Dream

Read full story

Life can win

Life can win The disease came upon me quickly and unexpectedly. Like a storm with no warning. Within a month, after a cold, I started… Continue reading Life can win

Read full story

Thank GOD I’m NOT Alone.

In March 2009, I was diagnosed with F.A.P/Gardners Syndrome. On Sept 10, 2009, I had my entire colon removed along with the majority of my… Continue reading Thank GOD I’m NOT Alone.

Read full story

Carnitine-acylcarnitine translocase deficiency (CACT)

Our son, Gage, was born on July 10th, 2008. Gage has been diagnosed with a rare genetic disorder called Carnitine-acylcarnitine translocase deficiency (CACT), which prevents… Continue reading Carnitine-acylcarnitine translocase deficiency (CACT)

Read full story


LEI … PSP Prima di conoscere Lei si vive nelle normali abitudini con normali equilibri con una normale serenità. Ora che si comincia a fare… Continue reading LEI…PSP

Read full story

The Name Of It All

I have had bad joints since I was born; when I was younger I was constantly complainging of my joints hurting and with sprains. Come… Continue reading The Name Of It All

Read full story

What I’ve Learned From Having a Child With a Rare Terminal Disease

Almost two years ago we sat in a neurologists office and were told our 2-year-old son had an incurable, untreatable, terminal brain disease. Vanishing White… Continue reading What I’ve Learned From Having a Child With a Rare Terminal Disease

Read full story

Mesothelioma the Asbestos Cancer

I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as… Continue reading Mesothelioma the Asbestos Cancer

Read full story

The Narcoleptic Nurse

To say I had an interesting journey through nursing school would be an understatement. When I started college in 2009, I never expected that I… Continue reading The Narcoleptic Nurse

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!