Ivy is my third daughter. With her I had a normal pregnancy with Ivy. As soon as she was born on the night of October… Continue reading My Little Warrior
Ivy is my third daughter. With her I had a normal pregnancy with Ivy. As soon as she was born on the night of October… Continue reading My Little Warrior
Today is Rare Diseases Day, so in light of that I want to raise awareness of my diagnosis, in the hope that someone else may… Continue reading I’d like to get off the boat now please.
Mina is a 7 year old girl who was diagnosed at 1 with TTD, a rare genetic disorder that has a broad spectrum of what… Continue reading Life with TTD
The NMC works together to support people affected by Muscular Dystrophy and other Neuromuscular conditions, creating an environment where full potential and optimal well-being can… Continue reading Neuromuscular Centre
I am Clive, an active, fit, and to the naked eye a healthy British Army veteran. In 2019, after several years of deteriorating function and… Continue reading Making the Most of Now
I am Kamran from Azerbaijan and I am 25 years old. Since birth I have suffered from Dystrophic bullosa epidermolysis. I could have not imagined… Continue reading Dreams through pain
My sight loss journey started in October 2019, when I was twenty-three years old. It began with a large spot just off my central vision… Continue reading Working To See The Big PICture
Cavernöst Angiom Sverige (CASE) is a non-profit organisation for patients with cavernous angioma (also known as cavernous malformations, CCM, and cavernoma). CASE is part of… Continue reading Cavernöst Angiom Sverige (CASE)
We are an alliance of healthcare and research professionals in the South West of England promoting genomic medicine services. We are here to support patients… Continue reading South West Genomic Medicine Service Alliance