About Us

Welcome to the online home of the ROHHAD Association.  

ROHHAD Syndrome is an extremely rare life threatening and life limiting disease that presents in children after the age of 1.5 years old. The children it affects are otherwise healthy prior to the onset of symptoms and for sufferers, the diagnosis is considered terminal.

The term ROHHAD is an acronym for Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation. It was first discovered in 1965, and since that time at least 100 cases have been documented. Statistically the children affected are 1 in 73 million.

ROHHAD is a cruel and complex syndrome that severely impacts quality of life. Every organ and system within the body of those affected begins to malfunction and some eventually fail, meaning that a large proportion of their lives is spent in hospital undergoing invasive investigations, treatments and surgeries. Those diagnosed with ROHHAD face a daily fight for survival.

Research can and will result in improved quality of life for sufferers and will also help medical professionals to diagnose those affected. We hope it will eventually lead to finding a cure. As a result, those suffering from ROHHAD need YOUR HELP NOW.



Our Charities Main Objectives and Mission

Our mission is to:

  • Fund and promote research that will lead to a new understanding of and treatments for ROHHAD, one day leading to a cure.
  • Offer support for people with ROHHAD, their families and their carers.
  • Campaign and raise awareness so that the needs of people with ROHHAD and all those affected by the disease are recognised within the wider society.

We will with the public’s help, bring about awareness.  We will allocate funds raised into medical research to find the cause/s of ROHHAD and with continued research we hope to find a cure. We are confident that Research will lead to at the very least  sustainable treatments that will allow sufferers to have a better quality of life. The ROHHAD Association offers support to all those diagnosed and affected by ROHHAD including those who may possibly have ROHHAD.


Please check our event’s page out for all details of our current and up to date events as well as planned fundraising activities.   2019 to 2020 we have the following

Aaron’s “muddy puddle” #GoMadJumpForROHHAD challenge a fun way to help raise awareness and funds, this is ongoing, visit our homepage to see Robert Downey Jr’s muddy puddle challenge for inspiration and how to do the challenge itself.

ZERO TO HERO – global virtual sports challenge that sees you setting the goals, suitable for all ages and abilities and ideal for schools and sporting clubs to get involved.  This is an ongoing challenge for 2019/2020 #GoMadForROHHAD #ZeroToHero

Rockin Around The Christmas Tree, Charity Danceathon at Intu Braehead Shopping Centre, Glasgow on Saturday the 7th of December 2019 #GoMadDanceForROHHAD 

Annual Charity Ball – Loch Lomond Shores “Glitterball” in September 2019

Annual Psychic Night – Summer 2019 (now complete)

West Highland Way “ZeroToHero” challenge (now complete)

#GoMadWaxForROHHAD ran at the beginning of 2019, it was a big success and may see us repeating it in 2020!


Those suffering from ROHHAD Need YOUR Help Now. PLEASE HELP Us Raise Funds to Improve their quality of Life and FIND A CURE

Charity Organizers

Elisabeth Hunter

Elisabeth Hunter


Ian Hunter

Ian Hunter


Kathryn Brownlee

Kathryn Brownlee

Louise Wilson

Louise Wilson


Stephen Whyte