The charity and its members are active in research into the condition and its major symptoms. The charity:

  • Is funding research at St George’s University of London Hospital into problems with the lymphatic system in people with Noonan Syndrome, with the report of their findings due in the latter part of 2016.
  • Is currently raising funds for new research into the incidence and treatment of epilepsy and brain disorders in NS
  • Is actively supporting the “30 Year Follow Up” to the ground breaking study begun by Professor Patton in the 1980’s.
  • Undertook a study into “Growing Up With Noonans” looking at the changes affecting people with NS as they grow into young adulthood and beyond.
  • Was actively involved in studies undertaken by the University of Manchester including cardiac-focused work and the CASPER Study (Cognitive and Social Profiling: Exploring Rasopthies) investigating areas where children with Noonan Syndrome and other closely related genetic conditions may have difficulties, such as attention and concentration, learning skills, and social communication.
  • Is supporting the team working on the revision of the NHS Clinical Guidelines for Noonan Syndrome.