OUR GOVERNANCE
Developing Through Rules We Respect
Developing Through Rules We Respect
We’re a patient-founded, volunteer-led group, formed to support people affected by Osteo-Odonto-Keratoprosthesis (OOKP). Everyone currently involved; from creators to group hosts; gives their time freely, driven by compassion and shared experience.
We believe people living with OOKP and their carers should have a say in how support is provided, and our structure reflects that.
currently, all individuals involved in the OOKP Support Service are volunteers who bring lived experience, professional knowledge, and a deep commitment to improving the lives of people affected by OOKP. We're proud to say this group has been founded by patients, for patients; and every role so far has been filled out of passion and purpose, not pay.
To comply with our preparation for obtaining charitable status, we’ll be governed by a Board of Trustees, including a minimum of three Executive Officer roles:
Chair – providing leadership and direction to the Board.
Secretary – managing communications, records, and meeting minutes.
Treasurer – overseeing financial responsibility and transparency.
Trustees will be selected based on their relevant experience, personal connection to OOKP, commitment to our mission, and ability and willingness to steer the organisation strategically and ethically, with integrity and vision.
Initially, our founding trustees were selected informally from a pool of committed individuals with direct or family experience of OOKP, alongside professional or personal skills to strengthen our governance.
As we grow, we’ll adopt a transparent and democratic process:
Trustee nominations will be accepted from members annually or as vacancies arise.
Nominees will be asked to submit a short statement and be subject to an interview by current executors and basic safeguarding checks.
All voting members will be invited to elect trustees via online or postal vote.
Appointments will be confirmed at the charity’s Annual General Meeting (AGM).
This ensures fresh perspectives, fair representation, and community ownership of the charity’s direction.
We’ll operate a voting membership model, giving patients, carers, and allies, a formal say in the services major decisions; like trustee elections, changes to the constitution, and strategic goals. Membership will be open to:
Individuals with lived OOKP experience (patients and carers).
Professionals supporting OOKP patients.
Volunteers or supporters committed to our aims.
Members will be encouraged to participate in annual and key decision voting, submit motions, and attend AGMs. We believe, people with direct experience, should help shape the future of their support services.
Currently, every person involved is a volunteer, offering time, skills, and heart; to establish a sustainable national support network. We are so grateful for the energy and compassion of our founding group.
Once we achieve formal charitable status, we intend to apply for grant funding to support:
Part-time/full-time staff (e.g., coordinator, counsellor, or admin support).
Volunteer expenses and training.
Digital tools to expand our reach.
Our ultimate goal is to grow into a professionally run, peer-powered organisation that combines the warmth of lived experience with the rigour of structured service delivery; improving outcomes and confidence for everyone touched by the OOKP journey.
If you wish to be considered for Trustee, please make your proposal vial email, expressing your reasons and experience, so a professional decision can be made.
THANK YOU FOR YOUR ASSISTANCE & SUPPORT!