I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR… Continue reading My experience with hATTR
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I never knew life without pain. It was my normal and it was the normal of all my adult family members. Growing up, I accepted… Continue reading I Am A Medical Enigma
Hello. My name is Claudia Pinzon. I’m 31 years old. I would like to share my POTS story with you. I’ve been having lots of… Continue reading My POTS (Postural Orthostatic Tachycardia Syndrome) story
Geoffray and his sister (who is 8 years older than he is) have suffered from poor sight since birth, without a precise diagnosis. Geoffray had… Continue reading Meet Geoffray
Summary I have officially survived Acute Lymphoblastic Leukemia (ALL) seven times! On October 26, 2010, I began treatment at Stanford University Cancer Center. When I… Continue reading Fight For Cures
6 years ago I was a healthy hard working mom of 2 teenagers. Then one day when I was at work I realized I could… Continue reading It is just a vitamin
I have always heard your teenage years are the hardest. If I had only known how horrific they would soon become for me I would… Continue reading Jessi’s Journey
Watch our Rare Disease Day highlights slideshow! First of all, a big THANK YOU for all of your efforts. Rare Disease Day 2016 was bigger… Continue reading Thank you for another successful year!
In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just… Continue reading Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness