Searching for a ‘Rare’ Trustee

Searching for a ‘Rare’ Trustee

Date: 06 Jun, 2019  No Comments

Alstrom Syndrome UK currently has vacancies for 3 Trustees to join the Board

Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss, loss of hearing, heart, liver and kidney problems. Most children will lose their sight and hearing.

ASUK is a small and dynamic charity focussed on supporting people and families, acting as a catalyst for research and digging deep to improve knowledge and understanding to improve the treatment and management of Alström Syndrome.

ASUK is moving into its next phase of development reaching out to all families. The board are keen to recruit new Trustees to help fulfil ambitious plans and to support the overall mission and strategy.

Role Description

We are looking for three people to compliment and expand the range of skills within the current Trustee team. We are looking for committed and motivated Trustees who can bring their strength, energy, insight and expertise alongside strategic vision, to fulfil this voluntary role.

We would like a wide range of people to fulfil these roles and we seek to be representative of the diverse population we support.

We welcome individuals with previous Trustee experience however we also welcome those whose career path or caring responsibilities have provided the expertise we seek. We are particularly keen to hear from individuals with experience in the following areas; social work with particular interest in children or adults with complex needs, scientific/clinical expertise or financial management.

You can read a personal message about the role from Trevor Parkin, Chair of the Board of Alstrom Syndrome UK (ASUK) HERE

What can you expect?

  • A unique opportunity to use your experience to champion one of the rarest syndromes in the world and expand our reach
  • A professional and supportive team, whose common goal is to further the insights into this condition and improve the lives of those affected
  • To attend 3 face to face Board meetings a year (currently at the weekend in Birmingham)
  • Contribute advice and support at quarterly board meetings. These are usually held by telephone in the evening.
  • Attend the Alström Syndrome UK conference (held once a year).
  • This is a voluntary position although expenses are paid (in line with our expenses policy).

How to apply

We would love to hear from you; tell us about yourself, the experience you can bring and more importantly why you would like to be involved in this unique opportunity.

Please get in touch with Catherine Lewis and send your information alongside your CV via email to

We would also greatly appreciate if you could complete the Equality and Diversity form which can be downloaded HERE 

This role will require a Disclosure and Barring Service (DBS) check to be undertaken.

Closing date – Friday 5th July 2019 at 5pm

We’re keen to get new Trustees on board as soon as we can to help with our ambitious plans. So please get in touch to introduce yourself and we will send you further information.

If you would like an informal discussion with the Chair, Trevor Parkin please email Catherine or call her on 01803 368871 in the first instance, and she will help to organise a call.

If you would like to know more about our work, please take a look around our website and you can also view our latest annual review HERE