Rare Disease Stories

Rare Disease - @this.little.heart.of.mine

Rare Disease - @this.little.heart.of.mine

“Ella Waldner is a 2 year old girl from Manitoba, Canada. Ella loves to play, get into mischief, practice her independence, and she especially loves going outside for wagon rides...

Rare Disease - @this.little.heart.of.mine

“Ella Waldner is a 2 year old girl from Manitoba, Canada. Ella loves to play, get into mischief, practice her independence, and she especially loves going outside for wagon rides...

Rare Diseases - @our_invisible_fight

Rare Diseases - @our_invisible_fight

"Hello, I'm from Switzerland. I'm 29 years old and I had to wait until I was 18 to have a reaction for my doctor to say something was wrong. For...

Rare Diseases - @our_invisible_fight

"Hello, I'm from Switzerland. I'm 29 years old and I had to wait until I was 18 to have a reaction for my doctor to say something was wrong. For...

Rare Diseases - @largerthanbws

Rare Diseases - @largerthanbws

“Our son Owen was born on February 7, 2018 weighing in at nearly 12 pounds and almost 2 feet long. When he was two weeks old he was officially diagnosed...

4 comments

Rare Diseases - @largerthanbws

“Our son Owen was born on February 7, 2018 weighing in at nearly 12 pounds and almost 2 feet long. When he was two weeks old he was officially diagnosed...

4 comments
Rare Diseases - @meeds_andmyhead

Rare Diseases - @meeds_andmyhead

"I choose the Zebra pin as it represents rare/chronic illness, I really want to raise awareness for my condition ehlers danlos syndrome type 3 as it’s been a hard journey...

Rare Diseases - @meeds_andmyhead

"I choose the Zebra pin as it represents rare/chronic illness, I really want to raise awareness for my condition ehlers danlos syndrome type 3 as it’s been a hard journey...

Rare Diseases - @ashleystuart94

Rare Diseases - @ashleystuart94

"I am Ashley and I am from Canada. I was diagnosed with idiopathic intracranial hypertension (IIH) in 2018 just a few months after I completed my university degree. IIH is...

Rare Diseases - @ashleystuart94

"I am Ashley and I am from Canada. I was diagnosed with idiopathic intracranial hypertension (IIH) in 2018 just a few months after I completed my university degree. IIH is...

Rare Diseases - @ciaagofficial

Rare Diseases - @ciaagofficial

"My name is Lauren Deluca and I am a rare disease advocate. After a life threatening medical emergency was mishandled, I was left suffering untreated with Superior Mesenteric Artery Syndrome....

Rare Diseases - @ciaagofficial

"My name is Lauren Deluca and I am a rare disease advocate. After a life threatening medical emergency was mishandled, I was left suffering untreated with Superior Mesenteric Artery Syndrome....