BDF Newlife has a long relationship with Noonan Syndrome (NS). BDF Newlife’s Chief Executive, back in 1984, began a parents’ support group for families with this condition. Later on when BDF Newlife became a reality, all research, support services and information on this condition became the remit of BDF Newlife.
The word syndrome means “to run together” and so refers to a condition in which certain clinical features characteristically appear together. Not all syndromes are genetic or necessarily very severe. Noonan Syndrome takes its name from Dr. Jacqueline Noonan who, as a Paediatric Cardiologist in the United States, noticed that many children attending her clinic with narrowing of the pulmonary valves were also short and had similar facial features. The first description was in 1963 and since then the condition has been recognised all over the world.
Having spent hundreds of thousands of pounds on research and established an internationally recognised research unit at St George’s Hospital, BDF has achieved important diagnosis, proper clarification of the condition, recommended treatments, therapies and management, information on education and behaviour, feeding, heart conditions and short stature as well as many other aspects of the disorder.
Each year BDF runs an annual get together for families and professionals interested in the condition, where research and news is reviewed and disseminated. Families get to meet and relationships and support networks are established. Check our Events section for latest details.
Through BDF Newlife, NS has gone from being the unknown condition to become one of the better recognised disorders. Not only has the research on NS benefited children and families but because it is a complex genetic disorder, information gained has also impacted on the knowledge of other syndromes, congenital heart disease, endocrine matters etc. BDF Newlife publishes a booklet on the condition that is freely available and is based upon its pioneering research.
NS Internationally
BDF Newlife is in contact with many small groups and families internationally who come together annually to exchange ideas and share experiences. Contact is welcome with any individual, family or professional concerned or interested in NS.
Noonan Syndrome Booklet
Our Noonan Syndrome booklet has been prepared by the Noonan Syndrome Research Unit at St George’s Hospital Medical School, London, which is funded by BDF Newlife.
The NS Unit at St George’s is now recognised as the leading international centre for NS research, having been established in 1987. The results of research have been published and presented internationally and have contributed significantly to the basis of contemporary understanding and treatment.
The free Noonan Syndrome booklet is available from the Publications page in Adobe Acrobat format or can be ordered in print form.
|
