Special Announcement for our ROHHAD warriors, their Families and all of our incredible charity supporters.
Our mission is to Find A Cure and we strongly believe that in time and with the continued support of all of you that our mission is possible and will happen. To help us achieve this we do all we can to raise awareness and fundraise for medical research into ROHHAD Syndrome.
Between our charities we currently fund 5 ROHHAD Research Projects, 3 in the USA and Canada as well as a further 2 in Europe. Working closely with the Research teams; it was very clear that everyone involved has the same goals and ambition which they hope will help their patients and ultimately lead to a cure.
After some hard work over the past 6 months and a number of meetings between all of the Research Teams and our charities we are delighted to share the amazing news that all have agreed to work together and we have formed the;
ROHHAD International Consortium
Our Mission is to work strategically and collaboratively as clinicians, researchers,charities, and families by raising awareness, expediting diagnosis, optimizing care,and ultimately finding a cure for ROHHAD, a rare orphan syndrome.
There will be sub groups of the ROHHAD International Consortium and one that will include our families and patients because each of you are crucial and vital in helping our mission succeed.
Over the holidays and in early January we will build the page for our websites and will soon be sharing our aims and methods as well as a full list of all our members.
We also hope to introduce to you all by the end of January too our new stakeholder sub group that will include patients and families from around the world.
All 3 of our children have ROHHAD Syndrome, Aaron, Marisa and Edwin. Our charities were founded in the hope of finding a cure not only for our children but for every child and young adult with ROHHAD. Knowing that everyone is now working together in the ROHHAD International Consortium fills all of our hearts with hope and we truly hope it does the same for all of you.
We are delighted to share this incredible news with you all today and we look forward to working together to help the ROHHAD International Consortium achieve its Mission.
Together we will #FindACureHappy
Holidays and a very Merry Christmas to all of our ROHHAD Warriors, their awesome families and our amazing charity supporters.
Much Love from:
Elisabeth (Lisa) Hunter, William and Danielle Carney, Rudy and Kim Polese-Blyth
ROHHAD Association, ROHHAD Fight Inc and ROHHAD Association Belgium