Volunteering for 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 a diverse range of volunteers who can contribute a wide variety of skills, experience and perspectives to our work.

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There are a number of benefits to volunteering at BBS UK such as:

Gaining knowledge about BBS

Growing your skills and experience for a future employed role

Improving communication skills

Networking opportunities

Working with diverse groups

Improving team working skills

Gaining references for future positions

Meeting like-minded people


For further information about Volunteering:

You can volunteer for BBS UK in a number of ways and we have a range of opportunities for volunteers to get involved in:
  • 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

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.

If you are interested in volunteering, we will ask you to complete the application form below.

Once we receive your completed form, a member of our team will get in touch to chat through more information on opportunities and discuss how we can best matches your interests and time availability.

If you would like to apply:

Become a Trustee

We are always keen to hear from anyone who may be interested in becoming a trustee. All our trustees are adults with BBS or parents of children with BBS.

Trustees bring other life or professional experience to the management committee.BBS UK is particularly interested in people with professional experience (marketing, media, PR, finance or legal) to support the charity with its membership communication and engagement. No previous Trustee experience is required.


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.


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 approximately three 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.


Become a Member of BBS UK

BBS UK’s members are at the heart of our work, and you’ll join a growing group of people who play a part in everything we do. Membership is free.
Members receive:
  • Our bi-annual newsletter
  • Our annual conference report
  • Information on BBS UK events and activities
  • The chance to vote to elect our trustees and to become a trustee yourself

Members can get involved in BBS UK’s work in all sorts of ways. There’s no pressure to do anything, but if you are keen, we'll support you every step of the way.

That might be as simple as taking part in surveys, focus groups, and consultations, to sharing your own personal experiences, or fundraising to support BBS UK’s work.

Membership is open to:
  • Any adult diagnosed with BBS and his/her family
  • Any family with one or more children diagnosed with BBS including legal guardians, foster parents, parents by adoption, and carers and grandparents.

All membership applications are subject to the agreement of the charity trustees.


To become a member, simply complete our online membership form: