Chair of the Board of Trustees

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Genetic Alliance UK is seeking a Chair who can help steer the organisation through its next chapter of growth, strengthening its influence and ensuring the voices of those living with genetic, rare and undiagnosed conditions are heard at every level.

• Location:Remote, with in-person meetings in London twice each year
• Salary:Reasonable expenses paid
• Closing date:Monday 11th May

As the incoming Chair, you will play a crucial role in supporting the Board and executive team to deliver the current strategy and to position Genetic Alliance UK for long‑term sustainability, impact and reach. You will ensure robust governance, clear strategic direction and a collaborative, high‑performing Board culture, while helping to enhance the organisation’s profile and strengthen key partnerships.

Genetic Alliance UK operates at the intersection of patient advocacy, policy and research, driving meaningful change across the healthcare system. To lead effectively in this environment, the new Chair will bring strong board‑level experience and the credibility to engage confidently with a diverse range of stakeholders.

Founded in 1989, Genetic Alliance UK is an alliance of over 220 charities and support groups. We work together with members to improve the lives of the 3.5 million people in the UK with genetic, rare and undiagnosed conditions, through ensuring timely and accurate diagnosis, coordinated and equitable care, and faster access to treatments. We are the only UK alliance working in this area.

Genetic Alliance UK is uniquely positioned to drive positive, transformative change. Our member organisations and the people living with genetic, rare and undiagnosed conditions are at the heart of everything we do.

Members range from small support groups and charities, founded and led by people with lived experience, to larger national charities. Genetic Alliance UK listens to each other’s experiences, learn from one another’s expertise and helps members collaborate and share knowledge. Through this alliance, we amplify the diverse voices of people living with genetic, rare and undiagnosed conditions. Our collective voice is stronger when we work together.

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Time Commitment: an average of 2-3 days per month

The Chair will provide inclusive, strategic leadership to the Board, ensuring Genetic Alliance UK is well-governed, financially sustainable and delivering against its mission. Working closely with the Chief Executive, the Chair will play a key role in shaping the organisation’s direction, supporting effective decision-making and representing the charity externally.

Key responsibilities will include:

• Providing clear leadership to the Board, fostering a collaborative, high-performing and inclusive culture
• Ensuring strong governance, compliance and effective oversight of strategy, risk and performance
• Supporting and constructively challenging the Chief Executive, while maintaining appropriate boundaries between governance and operations
• Leading on Board development, including succession planning, appraisal and skills diversification
• Acting as an ambassador for the organisation, building relationships with key stakeholders, partners and funders

Through their leadership, the Chair will have a significant impact in strengthening the organisation’s reach, influence and sustainability, ultimately helping to improve outcomes for individuals and families affected by genetic, rare and undiagnosed conditions.

The ideal candidate will bring a blend of strategic leadership, strong governance experience and a genuine commitment to the mission of Genetic Alliance UK. They will be an inclusive and credible leader, capable of guiding the Board while supporting and constructively challenging the executive.

Key qualities, skills and experience include:

• Proven board-level experience, ideally as a Chair or senior Non-Executive Director
• A strong understanding of governance, risk management and organisational performance
• Strategic thinking, with the ability to guide long-term direction and navigate complexity
• Excellent interpersonal and communication skills, with the ability to influence and build consensus
• A commitment to equity, diversity and inclusion, fostering an open and respectful Board culture
• The credibility and confidence to act as an effective ambassador with a wide range of stakeholders
• An understanding of or strong interest in the health, rare disease and/or charity sector

This is an opportunity for an individual motivated by purpose, who is passionate about driving meaningful impact and supporting a community whose voices are often underrepresented.

To view the role description and person specification, please go to the ‘How to Apply’ tab above, fill in your details and download the candidate pack.

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

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

Anish Patel | anish@peridotpartners.co.uk | 07932 557505

It is a pleasure to see your interest in joining our Board of Trustees for Genetic Alliance UK. Welcome.

Around 3.5 million people in the UK are affected by rare conditions, which are individually rare but collectively common. We campaign for timely diagnosis, better coordinated care, and improved screening, testing, services and treatment. We are a membership organisation comprising 220+ members, all of whom operate in the genetic, rare and undiagnosed condition field, a field that is growing apace with the increasing range of such conditions. Membership comprises charities involved in areas such as research, support for individuals and their families/carers and/or service provision. What they all have in common with us is passion and commitment to driving necessary change to improve the lives of people affected.

If you were to ask me to describe my experience as a Trustee, Vice Chair and Chair in only one word, that word would be: Privilege.

I have been Chair of the Board for six years and was a Trustee, then Vice Chair for three years before that, so I have served the maximum number of years possible. Over these years I have watched Genetic Alliance UK become a leading champion for our genetic, rare and undiagnosed communities through which our communities’ voice is at the heart of national policy, heard by Parliaments and Governments across the UK — from the UK Rare Diseases Framework and newborn screening to becoming a leading advocate for PPIE in research.

This means that we are now looking for a new Chair who has the relevant experience, expertise and demonstrable skills to lead our Board through our next phase of strategy implementation and development which will only be achieved through excellent relationships with the Chief Executive and Senior Management Team (and indeed all of our small team), all of whom are highly respected in their field. To continue adding value for our members, we will always bring their collective views and priorities to the heart of our work, challenging the UK Government and driving the change needed.

I can only repeat that my experience has been one of privilege and hope you will consider the opportunity to be Chair to lead our Board, which will undoubtedly bring interesting opportunities and challenges, but I am sure will be highly rewarding.

Elizabeth Porterfield MBE
Chair of the Board of Trustees

2024/25 was a year of significant progress for Genetic Alliance UK and the people we represent. Highlights of our achievements include:

• Shaping national policy.We played a leading role in implementing and monitoring the UK Rare Diseases Framework, influencing newborn screening reform, access to medicines, and the delivery of genomic services.
• Driving high-profile campaigns.Our “More than you can imagine” Rare Disease Day campaign brought together creative, lived‑experience voices representing over 50 conditions and reached more than a million people.
• Collaborating with researchersto accelerate innovation in diagnosis and treatment, ensuring our community has a meaningful voice in what is researched and how. For example, we worked with academics at the University of Cambridge and University College London to investigate the best ways to coordinate care, and we played a critical role in enabling people with lived experience to be partners in that and other research studies.
• Delivering in‑house researchthat fed directly into our policy work. One example is our major international review of how newborn screening decisions are made in 10 countries. These findings informed our July 2025 UK policy report and campaign, which aim to modernise and expand newborn screening in line with international best practice. This has already contributed to success, with NHS Scotland announcing that it will add Spinal Muscular Atrophy to its screening programme.
• Providing vital informationto more than 40,000 users — including organisations, individuals and families — through our website.
• Delivering essential practical resources, such as our new ‘Seeking a Rare Diagnosis’ guides, co‑produced with families, clinicians and member charities/support groups.
• Strengthening public engagement, reaching thousands through events, workshops and forums delivered everywhere from schools to parliaments.
• Growing our membershipto more than 220 charities and support groups, building an even more robust, resilient and flourishing alliance to influence change. 100% of our members said they would recommend us to others.
• Supporting 3,114 familiesof children and young adults up to 25 years old with syndromes without a name through our SWAN UK project. A total of 180 new families joined us during the year. We supported them by facilitating face‑to‑face and online communities, providing information and support, and raising awareness. 91% said they ‘agreed’ or ‘strongly agreed’ that they felt supported through SWAN UK.
• Growing our Patient Empowerment Groupto 30 members, giving individuals living with genetic, rare and undiagnosed conditions a powerful voice in policy decisions and public affairs.

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 include your home address, contact email and mobile.

Please ensure that your application is emailed to response@peridotpartners.co.uk, inserting “Application: Genetic Alliance UK—Chair of the Board of Trustees” into the subject field. You will receive an acknowledgement of receipt within 2-3 days. If you do not receive an acknowledgement, please contact our admin team.

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

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

Anish Patel | anish@peridotpartners.co.uk | 07932 557505

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

If you require any job information in an alternative format (e.g. large print), please contact Marie McQuade or Anish Patel. Please also let us know if you would like to submit your application in an alternative format.

Applicants with disabilities are welcome to contact us in confidence at any stage of the recruitment process to discuss any reasonable adjustments or support that may be required to ensure fair and equal participation.

Recruitment selection processes are based on evidence of competence stated in the person specification and in relation to our values.

Closing date: Monday 11th May 2026
Candidates informed of outcome: by Friday 15th May 2026

We are in the process of confirming interview dates. Once confirmed, we will update the site and contact those who have applied.

Peridot and Genetic Alliance 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 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.

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