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Chairperson BBS UK (Bardet Biedl Syndrome UK)

Bardet-Biedl syndrome (BBS) is a rare, complex genetic disorder that causes blindness, learning disabilities, and obesity, along with other symptoms. Join as Chair and make a lasting difference to those living with BBS and their loved ones.

  • Location: Remote/UK
  • Salary: Reasonable expenses paid
  • Closing date: 9 a.m. Tuesday 6th August

Who we are

BBS UK is the only UK charity dedicated to helping individuals with BBS and their loved ones — BBS is a rare, genetic disorder. We aim to offer wraparound support to those impacted by BBS, to empower them to live the lives they choose as valued members of society.

Bardet-Biedl Syndrome is a recessively inherited condition which affects approximately 1 in 100,000 babies born. Features of the syndrome include Rod-Cone Dystrophy, an eye disorder, characterised by tunnel vision and night blindness — which often leads to blindness; obesity; renal abnormalities; developmental delay; speech and language difficulties; extra fingers and/or toes and learning difficulties.

Not all of the features are always present in those diagnosed as having BBS, and each one can vary in severity and appearance. The variability in presentation and severity of the syndrome, together with the rarity of the condition (there are approximately 650 diagnosed individuals known to us in the UK) can mean a delayed diagnosis and lack of adequate local health care.

BBS UK provides advocacy services, NHS clinic support, up-to-date publications, and events that connect our community members and help them to navigate living with Bardet-Biedl Syndrome. Through these projects, we aim to ensure that those who seek our help are supported, connected, and empowered to achieve the best possible outcome.

“When my son had a diagnosis of BBS it was so reassuring to have an organisation to turn to for further information, support, and to meet other families who had been/were going through the same as us.”

About the role

We are looking for an experienced, professional and compassionate Chairperson to lead our Board of Trustees, many of whom have lived experience of BBS.

You will support and lead our strategic planning, deliver on all governance requirements, and be a highly visible member of our BBS UK community.

 As a BBS UK Trustee, you will have:

  • Induction, training, and reimbursable expenses
  • Opportunities to make strategic decisions and develop new skills
  • Occasions to network with likeminded organisations and professionals
  • Influence to shape innovative projects
  • Capability to make a real difference in the well-being of our BBS community

Who we are looking for

BBS UK is passionate about providing wraparound support for people, and the new Chair will lead the organisation in growing this support – and strengthening our effectiveness and sustainability.

We are looking for a new Chairperson with:

  • Strong leadership skills
  • Excellent communication skills who can liaise with board members, staff, service users, medical professionals and other stakeholders
  • Experience in charity governance, as a Chair or Vice-Chair
  • Passion for making a difference, with a particular interest in empowering persons with disabilities
  • A proven track record in developing strategic initiatives and steering an organisation forward, ensuring continued growth and success
  • Integrity, dedicated to abiding by our charity’s ethos and ethical principles

Time commitment

The expected time commitment for our Chairperson is 1-2 days a month on average as follows:

  • Chair a minimum of four Trustee meetings per year online and attend sub-committee and other meetings, as appropriate.
  • Attend annual conference
  • Lead annual strategy days
  • Host regular meetings with the Operations Manager

Meetings are held online with one in-person meeting usually held in London.

The new Chair will also be expected to attend the next AGM on Saturday 19th October.

For more details, please read our full Chairperson role description which can be accessed on the ‘How to apply’ page.

For further information about the role, or to arrange a confidential discussion, please contact our advising consultants at Peridot Partners:

Rachel Davies | rachel@peridotpartners.co.uk | 07961 208037

Marie McQuade | marie@peridotpartners.co.uk | 07903 442646

If you would like to know more about this role please contact Rachel Davies

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About us


Our unique experience, knowledge and understanding of Bardet-Biedl Syndrome will ensure that everyone who accesses our services is supported, connected and informed about BBS and empowered to achieve the best possible outcome.


We are committed to promoting positive health and well-being within the BBS community; to improving knowledge and understanding amongst those affected, the medical and educational professionals and the wider public; and to supporting research and raising awareness of Bardet-Biedl Syndrome.


  • Committed and passionate
  • Inclusive and community-minded
  • Experienced and understanding
  • Positive and forward-looking
  • Collaborative

96% said general contact and support from BBS UK is good and/or excellent.

Objectives and activities

BBS UK strives to unite and support our members through our projects and services.

BBS UK Trustees have regard to the Charity Commission’s public benefit guidance when exercising any powers or duties to which the guidance is relevant.

The Trustees always ensure that the projects and services we provide align with our charitable aims and objectives.

The main objectives of Bardet-Biedl Syndrome UK are:

  1. To preserve and protect the health and promote the welfare of persons affected by Bardet-Biedl Syndrome and their families.
  2. To advance the education of the medical and educational professions and the general public on the subject of Bardet-Biedl Syndrome and its implications for the family.
  3. To promote research for the public benefit in all aspects of that subject and to publish the useful results.

The main activities the charity undertakes in pursuance of its objectives for the public benefit are:

  • BBS Clinic Support Team providing support, facilitation and advocacy services to NHS multi-disciplinary clinics.
  • Advice Service supporting members with accessing local support across the areas of health, education, social care and benefits.
  • Information booklets available in multiple formats, including:
    • Medical Information Booklet
    • Introducing Bardet-Biedl Syndrome
    • Booklet for Schools and Colleges
    • My Life, My Future (Transition Handbook)
    • Who We Are and How We Can Help
  • Annual family conference weekend bringing beneficiaries together with interested professionals and experts, to provide access to the latest research and to participate in tailored workshops.
  • BBS UK website
  • Regular newsletters and an annual conference report
  • Social Media (including Facebook, Twitter, YouTube) to facilitate the development of an online community.
  • Young People’s Group (YPG) and Adult Focus Group (AFG).

Accessibility information

BBS strives to be as inclusive as possible. We understand that different members of the community have different access needs and have made some modifications to the way we do business to accommodate people from diverse communities and abilities.

Applicants with a disability are invited to contact us in confidence at any point during the recruitment process to discuss steps that could be taken to overcome operational difficulties presented by the role, or if any adjustments or support are required regarding the recruitment process.

For further information about the role, or to arrange a confidential discussion, please contact our advising consultants at Peridot Partners:

Rachel Davies | rachel@peridotpartners.co.uk | 07961 208037

Marie McQuade | marie@peridotpartners.co.uk | 07903 442646

    To access a full job description and application details,
    please fill out the form below.


    Thank you for your interest in this role. Please download the Role Description and Person Specification.

    To formally apply, please submit a CV and supporting statement (ideally maximum 2 sides of A4 each) that clearly outlines your suitability for the role against the criteria provided in the person specification, including your interest and motivation in applying for this position.

    Please ensure that your application is emailed to response@peridotpartners.co.uk inserting “Application: BBS UK – Chairperson” into the subject field. You will receive an acknowledgement on receipt of your application within 2-3 days. If you do not receive an acknowledgement, please make contact with our admin team.

    For further information about the role, or to arrange a confidential discussion, please contact our advising consultants at Peridot Partners:

    Rachel Davies | rachel@peridotpartners.co.uk | 07961 208037

    Marie McQuade | marie@peridotpartners.co.uk | 07903 442646

    As a sector-leading executive search consultancy, we know the importance of creating recruitment processes which are fair, inclusive and free from bias. We are committed to promoting equality and diversity and developing a process that values differences.

    If you have a disability that meets the definition set out in the Equality Act 2010, and you can show that you meet the ‘essential’ criteria described in the person specification, please let us know.

    If you experience any technical or accessibility difficulties, need help making an application, or have any additional support that needs to be considered as part of the interview and selection process, please let us know.


    Closing date: 9 a.m. Tuesday 6th August 2024
    Candidates informed of outcome: Tuesday 13th August
    First stage interviews: Monday 19th August 2024
    Second stage interviews: Wednesday 28th August 2024

    *Please note, the new Chair is expected to attend the AGM on Saturday 19th October 2024.

    Equal Opportunities Monitoring

    Peridot and BBS UK are committed to promoting equality and diversity. To help us raise awareness and support a culture that is diverse and recognises and develops the potential of all, we need to appreciate the profile of candidates who apply for positions. We will send you an equality monitoring survey at the point of receiving your application, in the interview phase and at the time of placement. This ensures that our processes remain inclusive and equitable throughout, and provides us with important data to help us showcase our impact. The information will be treated confidentially and anonymously and will help us to support our commitment to fair recruitment practices. All information provided will be held in the strictest confidence and will not be shared with anyone, in line with the Data Protection Act 2018. The information provided does not form part of the decision-making process and will not affect your application.

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