My Nonprofit Reviews

Finally a non profit organisation who is really dedicated to research. The ultra rare ASXL syndromes (Bohring-Opitz Syndrome-ASXL1, Shashi-Pena Syndrome-ASXL2 and Bainbridge-Ropers Syndrome-ASXL3) are under diagnosed and there is still inadequate knowledge and resources about causes, symptoms, quality of life and treatments. Research is desperately needed!