At the NSA we work closely with an experienced and highly skilled team of medical experts.
These medical practitioners work alongside our trustees and charity manager to ensure that applications for research on the syndrome are relevant to the condition and that money raised towards research is spent in the most beneficial way.
The team also advise us on the latest international research and developments in knowledge on the Rasopathy pathway so that we can disseminate this to our members. Members of the NSA have the opportunity annually to meet with representatives from the medical advisory group and to ask their questions directly at our informative annual Families for Families Day.
It is with regret that our medical advisors are unable to answer specific questions from our members. It is important to understand that every situation has to be considered in its own individual circumstances. Without an individual consultation to ascertain a full history and access to all the relevant information in the medical records our experts simply cannot provide accurate support or advise.
We would recommend in the first stages of inquiry into the best treatment for you, that you refer to the current clinical guidelines for the treatment for Noonan Syndrome. This will help signpost you, and your doctor to the very best practice for medical professionals to follow. We are currently working with our medical advisors to update these guidelines and when this process is complete our members will be made aware and the link will be updated. The guidelines can be accessed here:
Consultant in Clinical Genetics, St Mary’s Hospital, Manchester
Consultant Clinical Geneticist and Adviser to the Noonan Syndrome Association
Consultant Clinical Geneticist, St Mary’s Hospital, Manchester
Head of Lymphoedema Team, St George’s Hospital, London
Consultant in Dermatology and Lympho-vascular Medicine, St George’s Hospital
Consultant in Clinical Genetics, St George’s Hospital
Child and Adolescent Psychiatry, University of Manchester and Manchester Academic Health Sciences Centre
Consultant Paediatric Cardiologist/Honorary Senior Lecturer, Great Ormond Street Hospital
Consultant Cardiologist (Congenital Heart Disease), Bristol Heart Institute
Consultant Cardiologist, Royal Brompton & Harefield, London
Consultant Paediatrician, Great Ormond Street Hospital
Reader in Human Genetics, Institute of Molecular and Clinical Sciences, St George’s Hospital.
Clinical Senior Lecturer in Translational Child Psychiatry, University of Manchester
Each year we welcome our medical advisers to our families day where they are able to present the latest research, explaining the relevance of this research to our families and directly answer questions that our audience have. You can find audio recordings from previous families days here: