Thank you for visiting this webpage and your interest in potentially becoming a board member for the PTEN UK and Ireland Patient Group. Please do take the time to read through the information below. We have outlined what the aims and objectives of our charity are, what the job role of a trustee entails and the commitment that would be required for the position.

If you do have any questions, please do feel to contact us –

Contact Us

Sitting on a board of trustees is a very rewarding experience. It is your opportunity to use the skills you have acquired through your career and life experience for the greater good, thus helping a community that is in need of these skills. Having a diverse and knowledgeable board is important to us, as it is through these different skill sets that we can create a strong, supportive patient group that is the backbone of our rare community.

PTENUKI is a patient support group whose aim is to improve the lives of PHTS patients in the UK and Ireland. The charity’s 3 main objectives are to:

  • Promote patient health: through support, increased awareness, and the provision of more accurate and accessible information.
  •  Improve healthcare: through the awareness of PHTS within the medical community to help with earlier diagnosis and intervention, and supporting the improvement of better healthcare and treatments.
  •  Support and promote research: into treatment and prevention, and improved coordination of care.

We are looking for an individual to join our board, to fill the Chair of Trustees position. This is a great role for someone looking to broaden their professional career and personal experience, making a real difference to the patients and families we support.

We are looking for the right person to take on the role of our Chair of Trustees. The Chair is accountable for the successful running and achievements of the charity.

This role would suit someone who:

  • Has had previous experience leading a charity or managing a business.
  • Has a proactive work ethic.
  • Has good people and communications skills.
  • Is able to lead and motivate fellow trustees and volunteers.

The Chair of trustees is responsible for:

  • To uphold the objectives of the charity.
  •  Enable board members and volunteers to deliver effectively.
  •  Maintain board members and the proper functioning of the board.
  • Ensure the right policies and processes are in place for e.g.
    • Medical accuracy and Health & Safety.
    • Charity and legal compliance.
    • Charity Commission annual financial reports & returns.


  • Ensure appropriate financial controls are in place.
  • Keep oversight of the financial performance of the charity.
  •  Work with the treasurer and charity manager to ensure financial compliance.
  • Submitting of annual reports and returns.


  • Ensure trustees, volunteers and patients are kept updated with appropriate information.
  • Occasionally represent and advocate for the charity at events and meetings.

People Management

  • Responsible for trustee recruitment.
  • Line manage the Charity Manager paid role.
  • Oversee and guide trustees and volunteers in charity related activities.
  • Establish and maintain relationships with relevant patient groups, medical professionals and research organisations.

Skills & Experience
Full training will be given but the following criteria would be beneficial

  • Previous experience of being a Chair, Charity Trustee or Business Leader /Manager would be beneficial.
  • Effective leadership and people management skills.
  • Confident communication and interpersonal skills.
  • Good judgement and decision making capability.
  • A passion for helping people.

Hours, Remuneration and Application Information

  • Voluntary role, 3 year term / commitment.
  • Unremunerated, travel expenses paid.,
  • Hours: quarterly board meetings plus approx. 2-4 hours per month.

If you are interested in this role please email Kelly on