AaronMans Own Blog Written By Aaron Hunter for Rare Disease Day 2019 this is His Rare Reality Please Share

Meet Aaron or as many of you may know him as AaronMan 💪 he is one of our Inspiring ROHHAD warriors and he himself has written the blog below for you all to read, (well he told mum what he wanted to say and then watched carefully as she typed it for him making sure […]

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Posted on 28th February 2019

Meet Edwin – One of our inspiring ROHHAD Warriors this is his Rare Reality written by his mum Kim

Meet Edwin, one of our Inspiring ROHHAD Warriors, this blog was written by Kim Blyth-Polese his mum to help raise awareness for Rare Disease Day 2019 this is Edwin’s #RareReality “Having a child with a rare disease and how it affects our family : Meet Edwin who grew up like any other child and then […]

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Posted on 28th February 2019

Meet Kouya One of Our Inspiring ROHHAD Warriors – this is his Rare Reality written by his mum for rare disease awareness day 2019

Meet Kouya one of our Inspiring ROHHAD Warriors, this blog was written by his mum for rare disease awareness day 2019 this is Kouya #RareReality “KOUYA was born in January 2011. A little petite baby weighing 2,800 g height 49 cm he was very healthy. He was walking at 10 months old and was a […]

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Posted on 26th February 2019