The NSA is a growing organisation with a membership of around 500 families from across the UK and it’s growing month by month. The charity is run by a well-balanced trustee board and works in association with a committed and influential Medical Advisory Group.
The charity also has a successful track record supporting research – in 2018 St George’s Hospital London was able to develop research into disorders of the Lymphatic system associated with Noonan syndrome thanks to pump priming investment by the charity. As a result of this support, the hospital secured a large grant to take the work forward over 5 years.
NSA works hard to develop and maintain strong links with the US, Europe, South America and Australia. These relationships and active participation with the Genetic Alliance are crucial to sharing information and moving the charity forwards.
The charity has many priorities each year, for which we need the help of our members. In 2019/20 we are working towards the following goals:
- To support the revised international guidelines for the treatment of Noonan Syndrome and related conditions on the Ras/MAPK pathway.
- To work in association with our Medical Advisory Group to establish the planned Rasopathies clinic for the south of the UK at Great Ormond Street Hospital.
- To confirm the team and topic for the next research investment project.
- To continue to gather invaluable information on Noonan syndrome and related conditions on the Ras/MAPK pathway through the GenIDA database to support knowledge of the condition and drive research forwards.
- To continue to represent our members in understanding genetic possibilities to support those with Noonan syndrome and related conditions on the Ras/MAPK pathway.
- As we have every year since 2011, we will continue to host an annual national Families For Families Day providing an opportunity for families to hear directly from our expert professionals on the latest developments in medical research and treatment and other related topics such as learning and behaviour, education and living with Noonan syndrome as an adult. This event is now held over a weekend and brings families affected by Noonan syndrome from all over the UK together in a relaxed social environment where mutual support is nurtured, stories shared and lifelong friends made.
- To continue to improve our online presence through an informative website and social media ensuring that those who need our support in the UK can find us.
We are a small organisation that has achieved great things. We do however have very limited resources and your donation can really make a difference to the work that we do. You can support our organisation by:
- Joining our regular giving scheme and donating monthly
- Nominating our charity to family, friends, colleagues and organisations
- Signing up to Amazon Smile or similar schemes and nominating our charity to ‘give as you live’
Sending a one-off donation either through Virgin
Moneygiving or to us
To find out more please contact us at [email protected]romeassociation.co.uk