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ARPKD Trustee Vacancy

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The Role

The Polycystic Kidney Disease Charity is seeking to appoint a Trustee with knowledge and experience of ARPKD – autosomal recessive polycystic kidney disease – from a patient, parent, family member or carer perspective.

You will join a dedicated and friendly Board of Trustees, which has overall responsibility for the governance and strategic direction of the Charity, developing its aims, objectives and goals in accordance with the governing document, legal and regulatory guidelines. 

Additionally, you will lead on matters relating to ARPKD.

Previous trustee experience is not essential.

About Us

The Polycystic Kidney Disease Charity is the only UK charity solely dedicated to the concerns of people affected by PKD - Polycystic Kidney Disease - a range of incurable, inherited, long-term, chronic conditions that can cause kidney failure and affect other organs in the body.  We support those affected, their families and carers. We raise awareness and fund research.

Find out more about the Charity.

Role Profiles

Purpose of Role

  • Provide insights into the impact of ARPKD on children, adults and families through personal experience.
  • Champion ARPKD activities undertaken by the Charity.

General Responsibilities

Trustees have a collective responsibility, which is to hold the Charity “in trust” for current and future beneficiaries by:

  • Always acting in the best interests of the Charity, its staff, volunteers and beneficiaries.
  • Ensuring that the Charity complies with all legal and regulatory requirements as set out in the charities governing documents.
  • Ensuring that the Charity has a clear vision, mission and strategic direction and focuses on achieving these.
  • Acting as guardians of the Charity’s assets, both tangible and intangible, taking due care over their security, deployment and proper application.
  • Ensuring that the Charity’s governance is of the highest possible standard.

Term and Time commitment

  • 3-year term of appointment, renewable up to 9 years.
  • 4 face to face trustee meetings a year – held during the week, typically from 10am-4pm.
  • 2 to 3 monthly phone conference meetings per year – typically evening.
  • Attendance at appropriate events, meetings and functions.
  • From time to time, Trustees are invited to carry out pieces of work outside of monthly meetings such as policy reviews, research, relating to their area of expertise or skills.
  • Trustee meetings are held in locations across the UK.

Development

All PKD Charity Trustees are encouraged and supported to take advantage of relevant training and development opportunities.

Reimbursement

This role is voluntary and unpaid. Expenses will be reimbursed in accordance with the Charity’s policies – this includes childcare.

If you have any questions or would like to have an informal chat about the role, please call Tess Harris on 020 7387 0543/07793 819868.

To apply for this role please send a C.V and a covering letter by email to This email address is being protected from spambots. You need JavaScript enabled to view it.

Telephone or in-person interviews will be conducted by the Chair and 2 other Trustees. All appointments are subject to satisfactory references.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website