Filters

The joys of food

        When our son Logan was first diagnosed with Galactosemia our world fell apart. Having a rare disease was frightening and with… Continue reading The joys of food

Read full story

We Beg to Differ

Just what is this ‘TGA’ diagnosis that so few know about? Odds are good that many readers of this article have not heard of this… Continue reading We Beg to Differ

Read full story

Jessica’s Journey

Our beautiful daughter Jessica was born on the 13th July 2009 in the weeks prior to her birth we were told she had suffered extensive… Continue reading Jessica’s Journey

Read full story

… and in the end I win!

My name is Alessandra Donati I’m Italian and I play golf since 2013. I have a rare illness, the Charcot-Marie Tooth, better known with the… Continue reading … and in the end I win!

Read full story

STERKE YELKA

Hallo iedereen, welkom op mijn pagina! Ik ben Yelka, een vrolijk meisje van vier jaar oud die heel graag zingt, danst, kleurt, fietst en puzzelt.… Continue reading STERKE YELKA

Read full story

You’re not alone…. Interstitial Cystitis

Hello, My name is Mari Garcia-Ramirez and I have interstitial cystitis/ painful bladder syndrome. Due to the fact that this condition is labeled as an… Continue reading You’re not alone…. Interstitial Cystitis

Read full story

Team#EastonIsMyHero-FightagainstMPSll

Easton was born at thirty-six weeks gestation on January 6, 2017. He was almost immediately taken to the NICU for something called PPHN (Persistent Pulmomary… Continue reading Team#EastonIsMyHero-FightagainstMPSll

Read full story

GBS Suvivior

My name is Raymond Lopez.  My journey with Guillian-Barre Syndrome (GBS) began at age 35 in 1988. As I reflect back on my 10 months of… Continue reading GBS Suvivior

Read full story

Logan’s journey with Alstrom Syndrome

Our journey with Alstrom Syndrome … Logan and Mum Debbie New Zealand The medical story … born healthy … 9/10  on the APGAR scale… high… Continue reading Logan’s journey with Alstrom Syndrome

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!