Filters

Can’t Keep Me Down

I was in a car accident my senior year of high school. Someone hit my car while I was at a dead stop. Little did… Continue reading Can’t Keep Me Down

Read full story

One in three million- Superficial Siderosis

In January of 2014, our neurosurgeon called with great news. No sign of tumors. Gary could make arrangments to see if an otolaryngologist could discover… Continue reading One in three million- Superficial Siderosis

Read full story

on my own

My story. I had Anterior cervical dysectomy fusion C4-C5 with iliac crest bonegraft in November 7, 2013, I was again evicted from my relative house… Continue reading on my own

Read full story

Folletto Vincy

Sono Loredana Pensabene e sono la mamma di Vincenzo 19 anni, folletto Vincy, affetto dalla Sindrome Phelan Mcdermid, una rara malattia genetica.  La vita di… Continue reading Folletto Vincy

Read full story

MLD warriors from pakistan

This world is not a place where people can be together forever. Therefore no relationship can be taken for granted. I realized this when my… Continue reading MLD warriors from pakistan

Read full story

Suffering a rare disease Neuroendocrine Carcinoma (Thymoma)

Hello everyone my name is Freddie Dela Cruz Concepcion, 42-years old from Philippines and has been suffering a rare disease called Neuroendocrine Carcinoma diagnose by… Continue reading Suffering a rare disease Neuroendocrine Carcinoma (Thymoma)

Read full story

Ci sono anch’io

Ho 30 anni e ho la sclerosi tuberosa per fortuna in forma lieve . Apparentemente  sembro una ragazza  normale vorrei un  mondo dove l’ignoranza tra… Continue reading Ci sono anch’io

Read full story

Síndrome de Noonan,No lo elegimos apareció en nuestras vidas hace 15 años

Somos una familia como cualquier de vosotras,hace 15 años nacio Miguel y con el vino el Síndrome de Noonan,con el cual estamos luchando todos,y digo… Continue reading Síndrome de Noonan,No lo elegimos apareció en nuestras vidas hace 15 años

Read full story

Baby Frank is a Fighter

I had an emergency c-section at 36 weeks. My Baby was born with a life threatening congenital heart defect called Dilated cardiomyopathy. He has been… Continue reading Baby Frank is a Fighter

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!