ROHHAD Syndrome is a cruel, complex disease that severely impacts quality of life. An extremely rare orphan disease affecting approximately 1 in 73 million people worldwide. The children diagnosed with ROHHAD face a daily fight for survival and are unlikely to reach adulthood. To find out More about ROHHAD Syndrome click here.

The ROHHAD Association is a registered Scottish Charitable Organisation (SC045645). To find out more about us click here.


We are thrilled and so incredibly proud to share with you all that our very own selfless, brave, and inspiring superhero AaronMan has won the Good Morning Britain Young Fundraiser Of The Year Award; at this years Pride Of Britain Awards.

We have created an AaronMan Pride Of Britain Award Page, It includes a full reaction from Aaron, on how he feels about winning the award, his hopes for ROHHAD Research, how you can help his mission to #FindACure, as well as more photos and links to videos of the Awards

To view the page now click here.



"Robert Downey Jr has Gone Mad For ROHHAD! This is his Muddy Puddle Challenge!"

To donate to the "muddy puddle" Go Mad Jump For ROHHAD challenge click here


To Find out Why Robert Downey Jr is helping Aaron and our charity view this video


How the muddy puddle challenge began with his video appeal #AaronNeedsIronMan

Our Heroes featuring Lauren Hunter singing the charity single “Light The World For You”.

Written by Lauren Hunter, Louise Bushnell McFarlane and Greg Friel

Click here for more ways to support our charity and our latest events.


Click here to find out more about Aaron’s #ZeroToHero challenge.

ZERO TO HERO – Sign Up Here


Click here to find out more about ROHHAD research and the projects we are funding in 2019/2020.




Our very own Hero “AaronMan” Wins Pride of Britain Award 2019

  • On: 31st October 2019
  • By: Lisa Hunter

We are thrilled and so incredibly proud to share with you all that our ...

Delighted to share with you all the ROHHAD Reader Issue 3

  • On: 26th October 2019
  • By: Lisa Hunter

To See the latest issue of the ROHHAD Reader family newsletter, click ...


ROHHAD Research, child and family participants required urgently

  • On: 10th July 2019
  • By: Lisa Hunter

Good evening everyone, we will over the next few days be emailing the ...


Open Letter from our CEO Elisabeth with an important Research Update

  • On: 26th June 2019
  • By: Lisa Hunter

An Open Letter from our CEO and Co-Founder with an Update on ROHHAD Re ...

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