Something changed in my 30’s, it started slowly. I had worked with computers my entire adult life, long hours in front of the computer take… Continue reading Fighting for my Eyes, Fighting to be Seen
Something changed in my 30’s, it started slowly. I had worked with computers my entire adult life, long hours in front of the computer take… Continue reading Fighting for my Eyes, Fighting to be Seen
My journey starts in late 2019. At this time, I have been ice skating for 4 years. After a training session, I felt something was… Continue reading Jeremie’s story
My name is Nicolette. I am 21 years old and was diagnosed with Wilsons Disease in October 2023. Wilsons disease has not been known to… Continue reading My Journey with Wilsons Disease
Sara, a remarkable young lady who embodies the spirit of courage and resilience in the face of a rare neurodegenerative disorder known as Beta-Propeller Protein-Associated… Continue reading Shining Through Darkness: Sara’s Journey with BPAN, a Tale of Strength and Hope
She did not have a name for the longest time; all I knew was that she brought a pain I never knew existed. She would… Continue reading The Stranger that lives between my Bones
My name is Rain, From my earliest memories, I have carried the weight of excruciating stomach pains. These pains stole away the joys of a… Continue reading My journey is one of resilience, self-advocacy, and hope.
Benjamin was about 3 months old when he had his first seizure (that we know of), he was sent to sick kids hospital in Toronto… Continue reading Benjamin’s journey
In the run up to Rare Disease Day 2023 on 31 January at 5.30 CET, we hosted a webinar with guest speakers and medical experts… Continue reading Webinar: How to Raise Awareness Among Healthcare Providers
You might have seen the meme, or remember from science class, that “the mitochondria is the powerhouse of the cell!” It converts food into energy,… Continue reading Being Your Own Powerhouse