Charity Manager Vacancy 

Our small but growing charity was created with a very specific mission – to support people and families affected by Noonan Syndrome and related conditions (on the Ras/MAPK pathway) in the UK.  

Noonan Syndrome is one of a group of related genetic conditions known as the Rasopathies which are increasingly being looked at together for research purposes because of the way growth is targeted by the gene. The Noonan Syndrome Association (NSA) encompasses many of these related conditions but Noonan Syndrome is the main focus as the most prevalent of these complex genetic disorders, present in 1 in 2000 live births.  Despite this and its major impact on lives, it remains a comparatively little known condition. Being still comparatively little known, even amongst some of the medical profession, families affected by Noonan Syndrome have to face many challenges of parenting and caring without appropriate support and are often left feeling very isolated. Noonan Syndrome can vary greatly in breadth and severity. It is common for those affected by Noonan Syndrome to have an array of physical and health problems.  

Through regular contact with our members we identify their concerns, fears and needs. Hosting an annual families day conference and social weekend, having strong links to medical professionals dedicated to the syndrome and through links to international groups, social media, bulletins and our website we provide support and learn more about this rare condition every day. Research is central to our organisational aims and we have a positive history of funding vital research to shape future treatments.       

Our role gives you significant freedom in the way you organise your work but with that comes real responsibility to move the charity forward and the need for a disciplined approach. You can act quickly on the important things and you have the flexibility to control projects with support and guidance from our hands-on trustees. The best bit of the job is that you will get to know the people we are supporting on a personal basis. Our current manager has been with us for 9 years and will be staying as a trustee – because in his words “once you join the organisation you are hooked”.

Imagine working in a role where on days when your job feels difficult, spending 5 minutes with one of our supporters will get you fired up and ready to face any barrier that comes your way. This is a varied role, one day you could be designing a leaflet, the next risk assessing a venue for a conference day and finishing the week working with the auditors to prepare the annual accounts! Every day is a new adventure, you have an opportunity to build new skills and to discover elements of a role that take you further than you thought you would reach whilst working alongside a wonderful community of people.  

If this is the opportunity that you have been waiting for – we would LOVE to hear from you.    

To apply please review our job description and if you feel that you have the person specification required please complete our application form attaching your latest CV.

Closing date for applications is 16th November 2020.

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This could be the start of something very exciting. We look forward to hearing from you.