Filters

Camurati Englemanns Disease

I am 15 years old and have lived with Camurati Englemanns disease all of my life. As of now there is 1 in a million… Continue reading Camurati Englemanns Disease

Read full story

TMAU: Fish Odor Disease

Hello, if you read all of this thank you. I’m Tj. 21 year old from Southern California. And about 2-3 years ago I’ve had this… Continue reading TMAU: Fish Odor Disease

Read full story

An unexpected answer.

Our son was born perfect and healthy 3 years ago. He walked late but met all other milestones. We noticed that he was very clumsy… Continue reading An unexpected answer.

Read full story

NeuromyelitisOptica & my other Rare Diseases

Hi, T hope you can understand what my journey has been over the past 7 years of being disabled from my Diseases. I am now… Continue reading NeuromyelitisOptica & my other Rare Diseases

Read full story

vedere con le mani e’possibile

Io e mio marito volevamo un secondo figlio. Fu il nostro primogenito a dare la bella notizia a tutti i parenti il giorno di Natale.… Continue reading vedere con le mani e’possibile

Read full story

Langerhans Cell Histiocytosis … “At least it’s not cancer!???”

It is the final day of #HistiocytosisAwarenessMonth, and this is MY #HistioWarrior, Sean. Our journey has been long, so please bear with me. Our journey… Continue reading Langerhans Cell Histiocytosis … “At least it’s not cancer!???”

Read full story

I woke up with pins and needles and ended up paralysed

On New Years Day 2016 I woke up with pins and needles which wouldn’t go away. I tried to ignore them but they appeared to… Continue reading I woke up with pins and needles and ended up paralysed

Read full story

What it’s like having Interstitial Cystitis/painful bladder syndrome

What it’s like having Interstitial Cystitis. I have been peeing about every 5 to 15 mins, only drops come out. In between I’m getting nerve… Continue reading What it’s like having Interstitial Cystitis/painful bladder syndrome

Read full story

Having a Child with a Rare Disorder

My daughter, Campbell, was just diagnosed with a rare genetic syndrome called Bohring-Opitz Syndrome (BOS). This actually came as a relief of sorts because she… Continue reading Having a Child with a Rare Disorder

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!