Trustee - strategy and development

SEDS (Sussex Ehlers-Danlos Syndromes)

Register your Interest

Do you have strategy development skills and experience? Would you like to make a difference to people living with a debilitating, neglected condition? Do you have an open mind and excellent interpersonal skills? If so, then we are keen to talk to you.

Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) are multi systemic connective tissue disorders.  Lots of people can be hypermobile without any problems. It is when there are ‘issues with tissues’ that we need to be aware. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, soft and easily bruised skin, autism spectrum disorders, chronic fatigue, dizziness, palpitations and digestive disorders, dislocations, sprains and acute or wide pain syndromes such as fibromyalgia. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. Many people with EDS are also diagnosed with chronic fatigue syndrome/ ME as well.

Unfortunately it has been challenging to get awareness of these disorders and get appropriate support. At the moment there are 14 'types' of EDS plus HSD. This might change again in the future.

Jane Green, who has diagnosis of hEDS herself, founded Sussex Ehlers-Danlos Synderomes (SEDS) in 2018 to increase local specialised support and improve awareness, knowledge and understanding of EDS/HSD and co-occurring conditions plus advocate in key areas of health, social care, education and transport accessibility locally.

Since then SEDS has grown - actively supporting people in Sussex with EDS/HSD in living a more fulfilled life and raising awareness, funding therapies, activities and in some cases helping to save lives.  

SEDS is structured as a Community Interest Company and is currently governed by a board of three people, including Jane as chair.   There are a number of committed volunteers but no staff. 

We are now looking for another trustee to join the board to help with strategy development and provide back up to the Chair. 

Your role will be to:

  • Attend the board meetings (approximately 4 per year, currently via Zoom).
  • Support the Chair with developing SEDS' strategic direction. 
  • Be a sounding board and critical friend for the Chair. 
  • Represent SEDS at events and conferences (once COVID restrictions allow).
  • Get involved operationally in turning the strategy into action. 

If you'd like to find out more about this role and what's involved, please click the REGISTER YOUR INTEREST button, fill in your details and we will get in touch for an informal discussion.


Skills

We are looking for someone who has:

  • A genuine commitment to our cause. 
  • Experience of developing a small organisation or business unit. 
  • Strategy development skills.
  • An open mind. 
  • Innovative. 
  • Excellent interpersonal skills. You must be able to build a good working relationship with the Chair.
  • A willingness to make a hands-on contribution (as the charity has no staff)

Ideally you should be living in Sussex. 


Benefits

This is an opportunity to make a significant difference to the lives of people living with EDS or HSD - a neglected condition which shatters the lives of too many people and their families. 

When do I need to be available?

Details We are looking for someone able to commit about 8-10 hours a month on average. The time commitment is flexible to suit the right person and enable them to fit this role around their lives.
Morning Afternoon Evening
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Register your Interest

  • Details
  • Equal Opportunities Policy or Statement
  • Expenses
  • Health and Safety
  • Induction
  • Insurance Cover for Volunteers
  • Suitable for 13 - 16 years
  • Suitable for 16 - 18 years
  • Suitable for a group of volunteers
  • Support on Offer
  • This role is adaptable for different abilities
  • Training