medical advisory group

 

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:

https://www.noonansyndrome.org.uk/wp-content/uploads/2015/12/NS-Guidelines.pdf

 

advisory group 2

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.

Dr Shruti Garg

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:

2018
2018 – Families day recordings from the medical panel

2017
2017 – Information for teachers

2016
Professor Green’s Presentation – Families Day 2016
Question to the NSA Medical Advisory Group 2016

2015
Questions to the NSA Medical Advisory Group 2015