NSA Conference 2026: overview and slides • Noonan Syndrome Association

Posted on 19th October 2026 by Sandie

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Noonan Syndrome Association Conference 2026 – a day of learning and sharing of experiences

Thanks to the combined efforts of a 20-strong team of charity personnel and guest speakers, the NSA conference in Manchester proved to be a day that offered a truly holistic insight into Noonan Syndrome Spectrum Disorders (NSSD) to an audience of 66 people with personal experience in some way of a NSSD diagnosis.

Following a warm welcome and a report on current NSA news in its 40^th anniversary year from charity Chair, Sharon Allsopp, the guest speaker sessions commenced with a presentation from Dr Emma Burkitt-Wright (Manchester Centre for Genomic Medicine) and Dr Sarah Wilson (Sheffield Clinical Genomics Service), who outlined the work being done to update the international management guidelines for RASopathies, as well as talking through what care typically looks like for people with Noonan Syndrome and related conditions. It was particularly interesting to hear how there is a move toward more tailored care pathways depending upon the specific genetic diagnosis.

For the many parents in the room, the next session presented an insight into a project that the NSA is working on in collaboration with Dr Katie Coveney of Loughborough University. Many people will be familiar with the “Living with Noonan Syndrome” research, and this new project comes out of some of the feedback from that, which highlighted the need for greater support and guidance in the context of education. The Educational Toolkit project is still in its early stages, and the team are seeking more input from parents and educators to move it forward to the next stage of piloting in educational settings. Through being involved with this project and participating in focus groups myself, I have already learned so much from the insights of others and felt a sense of not being quite so alone in some of the experiences and situations I have already faced as a parent to a young child with Noonan Syndrome. It has also been wonderful to share some of the many positive things that are helping our children and young people feel supported and to highlight their strengths and interests. If you are interested in the project, please get in touch. The more input we have from people’s lived experience, the better the toolkit will be!

There followed a very moving talk from Feargus, a patient of Professor Sahar Mansour (consultant in clinical genetics, St George’s Hospital, London), who has Noonan Syndrome and has benefitted from life-saving treatment of severe lymphatic problems with Trametinib. Feargus gave a very eloquent and personal account of his journey, providing a very honest, human perspective on a complicated medical condition. He is now working full time supporting children and young people with autism and studying for a degree in physics. I am sure I am not alone in finding his story to be full of inspiration and hope, proving that, as Feargus himself said, “anything is possible!”

Before lunch, Dr Shruti Garg (Professor of Translational Child & Adult Psychiatry at the University of Manchester and an Honorary Consultant in Child Psychiatry at the Royal Manchester Children’s Hospital) spoke about learning and behaviour from early childhood through to adolescence and the way in which Noonan Syndrome and related conditions can have a significant impact. This particular aspect of Noonan Syndrome is less-well understood, and she offered some helpful, practical guidance to parents seeking ways in which to support their children. I found it reassuring to understand that when parents ask, “is it Noonan Syndrome or autism or ADHD or just my child?”, the answer is that it is often several things at once and each one can be supported. For parents of children aged 11-17, recruitment is currently ongoing for participants for a brain imaging study aimed at further exploring learning and behaviour differences in Noonan Syndrome Spectrum Disorders.

Continuing the theme of less measurable aspects of Noonan Syndrome, Dr Keir Shiels of the GOSH RASopathies clinic talked about feeding difficulties commonly experienced among children with Noonan Syndrome and related conditions. It was once again reassuring to hear that there are proactive approaches that can be taken to ensure that, with support, nutritional needs are met and children encouraged, without pressure, to explore and be curious about food. Keir highlighted the different ways in which feeding difficulties might present at different ages and stages, explaining that all of these result in dysregulated appetite. He also made the point that even if a child is not nutritionally insufficient, fussy eating can be a cause of concern and difficulty for the family as a whole. The information and advice were really comprehensive, and I am sure parents (me included) will be able to take a lot of this back to local feeding and dietetics teams.

The final speaker session of the day was all about the heart, and Dr Andrew Constantine (Adult Congenital Heart Disease cardiologist at the Queen Elizabeth Hospital, Birmingham) gave a very comprehensive summary of heart conditions and care pathways, particularly for adults with Noonan Syndrome Spectrum conditions. Takeaways from this presentation were that it is really important for patients to know their own heart and be able to provide relevant information to healthcare practitioners; it is also essential to know what signs and symptoms to look out for. Andrew also added to Dr Burkitt-Wright’s discussion about the importance of genetic information in determining appropriate care pathways.

With presentations on a wide range of topics, as well as testimonials and insights into lived experience from parents and patients, there was a lot to take in. This was certainly reflected in the number and range of questions put forward during the Q&A session. We would urge anyone who has further questions following the conference, to please contact us and we can pass them on to the relevant professional or provide further support if needed.

In addition to the formal guest speaker presentations, the day was also an opportunity for people to connect, whether that be parents of children with Noonan Syndrome or individuals with Noonan Syndrome themselves. During lunch and coffee breaks there were lots of animated conversations taking place and sharing of experiences, which will no doubt continue beyond the conference.

The day was also an opportunity to mark the 40^th anniversary of the first meeting of families affected by Noonan Syndrome, that would later lead to the foundation of the NSA. In that context it was also a fitting occasion to pay tribute to former NSA chair and trustee, Ian Legg, who will be stepping down at the end of this year. If it were not for his dedication and support, the charity would not be where it is today. Sharon Allsopp (current chair) gave a moving and emotional speech which beautifully highlighted how important Ian, Lesley, their late son Mark (who had Noonan Syndrome) and his brother Matthew have been, and continue to be, in raising awareness and in supporting families.