Trustee Vacancy

Are you passionate about making a difference to the lives of those living with disability? Then we want to hear from you!

BBS UK is looking for a new trustee, someone who is not personally connected to BBS or BBS UK, and who has professional experience (marketing, media, PR, finance or legal) to support the charity with its membership communication and engagement.

No previous Trustee experience is required.

Bardet-Biedl Syndrome (BBS) is a rare genetic disorder causing blindness, learning disability, obesity and many other symptoms. BBS UK is the only UK charity supporting those with BBS and is committed to promoting positive health and wellbeing within the BBS community.

We do this by providing a range of support, information and advocacy services ensuring that those who contact us are supported, connected and informed about BBS and empowered to achieve the best possible outcome

BBS UK is committed to equality, diversity and inclusion and are looking for trustees who bring a range of experiences and skills to complement our team.

As a Trustee you will have:

  • Induction, training and reimbursable expenses
  • Opportunities to make strategic decisions and develop new skills
  • Opportunities to network with likeminded organisations and professionals
  • Influence to shape innovative projects
  • The chance to make a real difference to the wellbeing of the BBS community


The expected time commitment is three Trustee meetings per year (lasting approx 3 hours each), via Zoom or at a central location; attendance at our annual AGM; and an annual strategy day. Regular monitoring and response of emails is also required.

To Apply:

Email for a trustee information pack and application form.

Interviews will hopefully be held face to face at a mutually convenient venue.

Closing date: 31st March 2022


Become a volunteer with BBS UK!

Volunteering is a great way to share your enthusiasm, skills and ideas whilst having fun and meeting like-minded people. Volunteers have an important role and can enrich and extend our work and help us make services more flexible and accessible.

We believe strongly in the value of volunteering and seek to involve volunteers from across the community in order to provide the members we support with a diverse range of supporters from throughout society who can contribute a wide variety of skills, experience and perspectives to our work. There are a number of benefits to volunteering at BBS UK such as:

  • Gaining knowledge about BBS
  • Improving communication skills
  • Networking opportunities
  • Working with diverse groups
  • Improving team working skills
  • Gaining references for future positions
  • Meeting like-minded people.

You can volunteer for BBS UK in a number of ways and we have a range of opportunities for volunteers to get involved in. Here are some details of the opportunities and areas where experience can be gained.

  • Volunteer at our Annual Family Weekend by helping with our conference day programme, running stalls or evening workshops or becoming a trip carer or crèche support worker
  • Volunteer and support our adult or children and family’s activity weekends or day trips
  • Volunteer on the BBS UK stand at exhibitions including Sight Village London, Birmingham or Manchester
  • Contribute to our newsletter
  • Become a Trustee. We are always keen to hear from anyone who may be interested in becoming a trustee. All of our trustees are adults with BBS or parents of children with BBS. If you would like to help the charity continue to be a user led organisation, please think about joining us. We also welcome trustees who can bring other life or professional experience to the management committee. For example, trustees with experience of fundraising or human resources can be invaluable to a charity like BBS UK.

We are very grateful to everybody who gives their time to volunteer with BBS UK. Some types of volunteering with us could involve a regular commitment, others are more informal. We hope you will be able to offer your commitment to us which will allow us to give you an appropriate level of support and plan our services. If you are interested in volunteering, you will be asked to complete a simple application form. Once we receive your completed form, a member of our team will get in touch with more information on opportunities and we can decide together which option best matches your interests and time availability. Potential trustees will be invited to come along as observers to management committee meetings first to get a better idea of what would be involved before committing themselves.

If you would like to apply please complete the BBS UK Volunteer Application Form

For further information about volunteering, please contact us at