ROHHAD Research, child and family participants required urgently

Good evening everyone, we will over the next few days be emailing the families who have agreed for us to contact them regarding medical research however time is vital for this particular research project as the time line has been altered by those funding the exome sequencing and samples are now required sooner. Therefore we […]

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Posted on 10th July 2019

Open Letter from our CEO Elisabeth with an important Research Update

An Open Letter from our CEO and Co-Founder with an Update on ROHHAD Research Good Evening ROHHAD Avengers! We are excited to announce that the process of awarding funding for ROHHAD research in 2019/2020 is almost complete. The charity received four proposals in total from four different teams of researchers across the globe and all […]

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Posted on 26th June 2019

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