Delighted to Ask for Support for our New Charity Ambassador – Emily Middlemas

SOME MORE AMAZING NEWS !! Hello to all of our followers thank you so much for sharing Aaron and the ROHHAD Associations amazing news last night that the Marvel Universe LIVE! Heroes completed his puddle jump and are supporting his campaign to #GOMADJUMPFORROHHAD . Today we want to talk to you all about this amazing […]

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Posted on 15th October 2016


We are delighted to share with all our amazing supporters wonderful news.  The team behind Marvel Universe LIVE! have been in touch with Aaron Hunters family and they have shown an incredible amount of support for him, his awareness campaign and the children battling ROHHAD.  4 of the actors who play the superheroes in the […]

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Posted on 14th October 2016

ROHHAD Research UPDATE – International ROHHAD REDCap Registry

Please see the extract below from our recently updated Research Page.  There is currently an International Registry being compiled by Lurie Children’s Hospital in Chicago.  They are looking for participants from around the world and would like for all the currently diagnosed ROHHAD children to participate if possible.  Please read below and feel free to […]

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Posted on 4th October 2016