He Said / She Said

We were living in rented accommodation, which we both hated. It wasn’t a bad house at all until you got to the North Pole , known in many homes as the kitchen. Having a fridge in there seemed pointless, as we used […]

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My big brother !

I had the honour of writing a piece about my big brother over on A Special Purposed Life to help bring awareness for Down Syndrome over the month of October . Hope you enjoy my little story ! Thank you so much […]

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**Guest Post by Sally** #mpsawareness

  In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]

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A daddy’s voice – Anthony Woods

A dad losing his baby girl to a rare disease. I was asked to write a piece for rare disease day from a dads perspective. I could have written a book but here is a short piece of my life with a […]

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What is Neurofibromatosis type 1? By Miriam Gwynne

Just another disease you had never heard of? My son has a rare disease. A rare disease is defined as a condition that affects less than 5 in 10,000 of the population. His condition actually affects 1 in about 3,000 people meaning […]

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One Of These Is Not The Same, Or Is She?- Wendy Ferguson(Guest Writer)

One of these is not the same. Can you tell which one? They are all sweet little girls, happy, bright-eyed, full of love, full of hope and have a lifetime of memories to make. They are the same, right? Well, not exactly […]

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Rare…or could it be rarely diagnosed ? By Melanie Gomez

When my second baby was just a few weeks old, he seemed different than his brother before him. I made mention to the pediatrician, and she sent me back home and scolded me for comparison “no two babies are alike”. Those weekly […]

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Rare Disease Day- Guest post by Sally Mitcham

Rare diseases aren’t that rare. Really? Sounds a bit contradictory, doesn’t it? Rare means that it’s very unlikely that we’ll ever have to worry about it, right? Well, only partly right. There are over 6000 rare diseases, and 1 in 17 people […]

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Rare Disease Day February 29th

Hello! Just a very quick post to let you know that I will be having a few guest writers writing about Rare Disease Day towards the end of the month! They are established writers so I am very excited to be having […]

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