Filters

My life with Sarcoidosis and what it has done to me!

My Sarcoidosis story: Hello my name is Frank Rivera. I am 47 . My story actually goes back to 2004. While in Florida I was… Continue reading My life with Sarcoidosis and what it has done to me!

Read full story

Rare disease-a tragic reality in India

The World out of sync with the obscure and abstruse reality fails to grasp and shrugs at the apocryphal term VHL or von-Hippel Lindau, an… Continue reading Rare disease-a tragic reality in India

Read full story

Central Pain Syndrome: Pain from my brain‏

I live with an incurable, torturous & poorly understood pain known as central pain syndrome, CPS. CPS is caused from damage to the central nervous… Continue reading Central Pain Syndrome: Pain from my brain‏

Read full story

spcd

My daughter is diagnosed with a rare metabolic disorder spcd (systematic primary carnitine deficiency) she almost died at the age of 14 months due to… Continue reading spcd

Read full story

Fighting H.A.R.D.

I am Allie, and I am starting an organization for other kids like me who have rare diseases. We are raising money and awareness by… Continue reading Fighting H.A.R.D.

Read full story

Estou doente e cansada de estar doente e cansada

Viva, O meu nome é Alexandra Manata, tenho 44 anos, resido em Ermesinde, casada e tenho um filho de 11 anos. Sou licenciada em Ciências… Continue reading Estou doente e cansada de estar doente e cansada

Read full story

Morvan’s Syndrome

My name is Christine & I am writing this in regards my to son, Justin. We reside in Lake Stevens, WA. On March 30, 2010,… Continue reading Morvan’s Syndrome

Read full story

Visual Snow: My Story

Visual Snow: My Story Posted on June 25, 2014 by Jackie This article is intended to spread awareness about a rare condition called Visual Snow.… Continue reading Visual Snow: My Story

Read full story

Wegener’s

I was diagnosed with Wegener’s in June 2009 at the age of 61. I was working toward retirement and enjoying the rest of my life.… Continue reading Wegener’s

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!