Filters

Rare Diseases Day changed My Life (APS-1)

I was diagnosed with Autoimmune Polyendocrine Syndrome-Type 1 over fifty years ago and had not met anyone with this condition until two years ago. The… Continue reading Rare Diseases Day changed My Life (APS-1)

Read full story

A Lifetime of Waiting For Answers

Today is Rare Disease Day 2017, a day intended to raise awareness for rare diseases and the need for policymakers and the public to support… Continue reading A Lifetime of Waiting For Answers

Read full story

PKU

Hi. My name is Kelly and I have phenylketonuria or PKU which is a rare disease. PKU is a genetic disorder that restricts me from… Continue reading PKU

Read full story

Allexis Siebrecht

LIFE WITH A RARE DISEASE My name is Allexis Siebrecht. I was born on October 14th, 2003 with a RARE liver disease called biliary atresia… Continue reading Allexis Siebrecht

Read full story

I fought Aplastic Anemia and won!

On October 30, 2013 I was diagnosed with Severe Aplastic Anemia, a rare disease in which there is a total failure of the bone marrow.… Continue reading I fought Aplastic Anemia and won!

Read full story

Inter cranial hypertension

My name is David. At the age of 21 I was diagnosed with IH, with papillary edema. Had to be flown to a hospital 250… Continue reading Inter cranial hypertension

Read full story

Living with Hemicrania continua

I have a condition known as Hemicrania continua, quite literally “continuous half-head pain”. My right side is affected, where I suffer a permanent background headache… Continue reading Living with Hemicrania continua

Read full story

Hystiocytosis

Diagnosed with Rosai Dorfman 11/2014. Ups and downs but fighting on.

Read full story

I have Addisons disease

I almost died before someone connected my symptoms to JFK, now 20 or so years later I have done what they said I shouldn’t and… Continue reading I have Addisons disease

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!