What is parahemophilia?  It is commonly known as Factor V deficiency (FDV) and is a clotting (or coagulation) disorder where a specific protein is missing… Continue reading Making our RARE voices heard
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This is Millie, this is our story. This little girl is 3 and has been very poorly since she was born. She has just been… Continue reading CSID (Congenital Sucrase – Isomaltase Deficiency)… the battle to diagnose a rare disease.
Rare Disease Day 2019 puts rare disease patient stories in the spotlight. This year’s campaign brings together three testimonial videos that tell the stories of… Continue reading Watch new patient videos for Rare Disease Day 2019
I gave birth to the most amazing little girl on August 31st, 2016Â at 11:51 PM. She weighed 7 lbs 10.5 ounces and was 21 inches… Continue reading Rare Beauty
The countdown to Rare Disease Day 2019 has officially begun. The 12th edition of Rare Disease Day will take place on 28 February 2019. The… Continue reading 100 days until Rare Disease Day 2019!
Ocular Melanoma (OM), two words I had never heard together before September 2009. The purpose for sharing my story is to educate people about Ocular… Continue reading The light
In May of 2006 I was playing hand ball with my little girl in our apartment complex. The symptoms came on all at once and I… Continue reading GBS/CIDP/LUPUS WARRIOR
Guillain-Barre Syndrome (GBS) is a rare neuro illness that affects one in every 100,000 people in the UK. It is so rare very little research… Continue reading GBS Tries To Fight you…But You End Up Fighting GBS
Mother of two, Magdalena, speaks about how a rare eye condition Autosomal Dominant Retinal Dystrophy, affects the lives of both her son and husband. Â The… Continue reading Living with a rare eye disease