Rare

It is estimated that there are 350 million people worldwide living with a rare disease. That is the only statistic I will share with you today. I have written many, many times about the statistics around having a rare disease. I have […]

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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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Does that seem fair to you?

  My son was diagnosed with a life limiting condition, called Hunter Syndrome back in 2008. Our lives changed forever. It was a long journey from Ethan’s birth to his diagnosis …five years and ten months to be exact. In 2008, we […]

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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 2016

The last day of February is and has been Rare Disease Day (in Ireland) since 2008. That is the same year Ethan was diagnosed with a rare disease called Hunter Syndrome. It is estimated that there are over 6000 identified rare diseases […]

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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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