Rare disease

Rare disease

Rare Diseases South Africa bridges the gap to improved quality of life for those impacted by Rare Diseases and congenital disorders through advocacy and empowerment.

Information includes a list of rare diseases and the definition of the term orphan disease, which is sometimes used as a synonym for rare disease

“There's an assumption that all doctors know and learn about rare diseases. This is certainly not true.”

AWARENESS !!! Pots

Rare Disease Day - Rare Disease Day for those with rare or rarely known disease.

A young woman who was diagnosed with a rare and incurable disease which paralysed her stomach has been sent home from hospital to die.

"I know more about my disease than my own doctor does."

There are some things that only people with chronic illness and invisible illness understand. There situations are familiar for all of us. How do you know you are a Chargie? When these all resonate with you, you are a Chargie! People with a rare disease are called Zebra's. It comes from an old saying they used to teach doctors in medical school. "When you hear hoof beats, think horses, not zebras." It means to look for the more common causes , do go looking for the rare diagnosis. In our…

You might be an Ehlers-Danlos Syndrome / EDS Zebra if... you can find the humor through the pain!