Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2020 events
Tell your story!
Life with Episodic Ataxia
Darcy - United States
Episodic ataxia type 2
My name is Darcy & this is my story "Life with Ataxia" my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child. I was late to walk, talk & use motor
From fear to faith....
Shari Mcfarkand - United States
Amyliodosis Al
My husband was this amazing athlete, who turned his love for track into coaching, and working with troubled youth.  Always healthy, one day he was fine and the next he just wasn't.  We moved from cold,
Life with Trigeminal Neuralgia
Crystal - United States
Trigeminal neuralgia
My name is Crystal. I’m 23 years old, and was diagnosed with Trigeminal Neuralgia, in May of 2017. That was 4 days after my 21st birthday. I woke up and the right side of my face was numb. Immediately