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

Meet Chance One of Our Inspiring ROHHAD Warriors- blog written by his mum Amy this is his Rare Reality

Meet Chance one of our Inspiring ROHHAD Warriors this blog was written by his mum Amy to help raise awareness for Rare Disease Day 2019 – This is Chances #RareReality “In September of 2003 my life changed drastically. I gave birth to a miracle! Chance was born with several rare disorders including Septo Optic Dysplasia, […]

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Posted on 26th February 2019