• Location

    United Kingdom

  • Sector:

    Directors & CEOs

  • Job type:


  • Salary:

    circa £55,000

  • Contact :

    Jenny Hills

  • Contact email:


  • Contact phone:

    020 7820 7321

  • Job ref:


  • Published:

    4 months ago

  • Duration:


  • Closing date:


  • Posted:


  • Consultant:


We are looking for our next Director to build on our strong foundations at Dravet Syndrome UK and lead our small but committed, fully remote-working team. It s an exciting and hopeful time the charity, with new treatments in development and the charity s first five-year strategy launched in 2021 with ambitious plans for further growth under our new Director.

Dravet Syndrome is a rare, life-long and life-limiting neurological condition, affecting one in every 15,000 people in the UK. As well as severe, difficult-to-control seizures, Dravet Syndrome encompasses intellectual disability and a spectrum of associated comorbidities, which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, feeding and sleep. Every child or adult with Dravet Syndrome is different, with some affected more severely than others, or with a different emphasis across symptoms and comorbidities. But for all, the condition is complex and can be highly unpredictable.

Dravet Syndrome UK is a registered charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research. The charity was established in 2008 by a group of parents who came together looking for support, resources and information. In that time we ve grown significantly and now support over 500 families UK wide with a diverse support offer, world-leading educational materials and funding for cutting edge research in partnership with the likes of Great Ormond Street Hospital Charity.

Key details:

Job Title: Director, Dravet Syndrome UK
Salary: circa £55,000
Hours: Full time, with occasional weekend and evening work
Location: Home-based, with the requirement for nationwide and occasional international travel

Amongst other criteria, the successful candidate will have:

  • Proven record of achievement in a senior position within a small charity/not for profit organisation.
  • Experience of working within a small organisation undertaking both operational and strategic duties.
  • Track record of success at securing income from trusts/foundations, alongside other means of income generation (e.g. community fundraising, corporate sponsorship, regular giving etc.)
  • Experience of effective partnership working, development and external relationship management.
  • Experience of managing, motivating and developing staff.
  • Experience of project management and service delivery across multiple functions.
  • Strong financial management skills, including the ability to analyse budgets and accounts and manage annual budgets to target.
  • An understanding and demonstrable appreciation of the issues affecting families living with life limiting conditions.
  • Highly developed emotional intelligence, along with being highly empathetic.

We encourage applicants who are from underrepresented groups with protected characteristics, as we value having a diverse pool of applicants to find the best candidate.

If you would like to receive an Information Pack for this Director role with details on how to apply, please send an expression of interest and (optional but appreciated) a CV or professional profile in confidence to our consultant, Jenny Hills at executive@harrishill.co.uk. For an informal and confidential conversation about this position, please contact Jenny at the above address with your number and suitable times to speak.

Closing date for applications: 9am, Monday 21st February