Parexel are raising awareness throughout February in the run up to Rare Disease Day by spotlighting patients and caregivers within our organisation, as well as… Continue reading Parexel
Results for "light up for rare"
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20 November was the launch of the official #RareDiseaseDay 2023 video in over 40 languages! This 20-second video kicks off the international patient-led campaign and… Continue reading Official 2023 Global Video Launch
It took us 14 years to get a correct diagnosis. I first had signs that something troublesome was going on in 2004. I was passed… Continue reading Keep Searching for Answers
I was born in Portugal with a rare genetic disorder called Crigler Najjar Syndrome (CNS) type 1, a serious condition affecting the liver. CNS is… Continue reading A happy story with Crigler Najjar type 1
We care for alopecia areata, an autoinmune disease, including its most agressive forms (alopecia totalis & universalis, both rare diseases) and frontal fibrosing alopecia, another… Continue reading Asociación Argentina de Alopecia Autoinmune
Hi everyone, my name is Dwayne; I am 54 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I… Continue reading I am Smashing Pompe!
What was supposed to be a routine cleaning at the dentist led to being diagnosed with two chronic diseases. Between checking for cavities and reminding… Continue reading “It’s all in your head.”
Our daughter, Bianca was diagnosed with HSAN IV (hereditary sensory autonomic neuropathy) also known as CIPA (congenital insensitivity to pain with anhidrosis) at age 8… Continue reading A Life Without Pain
My story has been written as a blog for sometime now. This is the title page ☺ Four and a half years ago, in May… Continue reading Let’s see what happens now.