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Introducing the National Member Forum
The National Member Forum was established in 2025 to unite patient voices across Ireland with one goal – to ensure patient experiences directly shape the future of the IKA. Together, members will develop a clear framework for supporting resolution of patient issues, create strategies to influence the delivery and improvement of health care services in Ireland, and influence the quality of care and service provided by the IKA. They will also influence IKA policy, practice and advocacy positions to help future-proof the IKA.
MEMBER FORUM NEWS
The first meeting of our National Member Forum took place in November 2025, with 15 of our then 18 nominated branch representatives in attendance. As at October 2026, 22 branches are represented on the Forum, with two additional branches in the process of nominating their representatives. We’re building the foundations of what promises to be a strong platform to represent those living with kidney disease across Ireland.
OUR WORK TO DATE
Although it’s still early days, a lot of work has already been done. Since it’s establishment, the Forum has met five times and are due to meet again in Athlone on 10 October 2026 for a full-day workshop. At that meeting, representatives will work with Branch officers, Board Directors, and our external expert advisors to provide input into the IKA Strategic Plan for the next five years. Five members also represented kidney patients at the End Stage Kidney Disease Data System Workshop, a series of three workshops developed to shape the future direction of the National Kidney Disease Data System.
MEMBER FORUM DIRECTORS ON THE IKA BOARD
At the 2026 AGM on 4 July, IKA members voted to approve changes to the organisational structure of the IKA. This included a plan to restructure of our Board, to ensure the IKA is equipped to meet our legal and regulatory obligations. As part of this change, the number of Directors on the Board will reduce from 25 to 11 (an optimal size for an effective Board). Six of these Directors will be elected from the pool of Member Forum Branch Representatives, ensuring the patient voice remains at the heart of the IKA Board. This change will not happen overnight. We are currently in a transition period, where our current Board will be joined by Member Forum-appointed Directors to ensure stability and consistency for the Association while the new structure is being implemented. To learn more about the new structure, please visit our AGM webpage.
INTRODUCING OUR FIRST CHAIR
In September 2026, CathrÃona Charles (Leitrim Branch) was elected Chair of the Member Forum by her fellow Forum representatives. Cathriona brings a wealth of lived experience, both as a kidney transplant patient and as a long-time volunteer with the IKA. Among other roles, CathrÃona served on our Board for 15 years, and as a facilitator with the IKA Living Well Programme. We’re excited and honoured to have her at the helm as we develop the Member Forum into the future.
LEARN MORE
There are a number of ways you can learn more about the work of the IKA National Member Forum:
- Speak to your Member Forum Branch Representative: (see the list below). We encourage all representatives to provide updates to, and seek input from their branches at meetings, over WhatsApp or email, or through whatever means your branch uses to communicate. Since every branch is different, you can decide what works best for your branch.
- Reach out to your branch officers: To ensure full transparency, all presentation slides, meeting minutes and a one-page ‘key takeaways’ document from each meeting are shared with branch officers on our Branch Resources portal. We encourage branch officers to share these resources with their members at meetings or on request.
- Keep an eye on this page where we’ll be adding updates from time to time.
Nominate your Branch Representative
Each Branch may nominate a representative to the Member Forum. If your branch has not yet nominated their representative to the Forum, please review the documents below setting out the requirements a Forum member will be expected to meet to represent their branch, and details of the process that must be followed to nominate your Branch representative.
Member Requirements
Nomination Process
National Member Forum
Frequently Asked Questions
The National Member Forum was created by our National Board to ensure the Association is more representative and led by kidney patients, and their families and carers. The Board drafted and approved the Forum’s Terms of Reference that governs how the Forum will operate. Once established, the Forum’s voting members, primarily patients, family members, and carers, can propose changes to its operations and structure.
The operating environment for national charities has grown increasingly complex, requiring our Board to dedicate significant time and energy to stringent regulatory, governance, and financial obligations. While this compliance is essential for safeguarding assets and maintaining public trust, it must not come at the expense of our core identity of being patient focused. This clear division of focus allows the Board to excel in its legal and governance duties, while the Member Forum champions the patient perspective. Together, this ensures we not only meet today’s compliance requirements but also remain authentically patient-centred in all we do, both now and in the future.
The Member Forum will serve as a platform to ensure patient experiences directly shape the future of the IKA. Together its members will:
The Forum will formally advise the IKA Board through written reports that detail member forum discussions, concerns, proposals, and strategic priorities. These contributions will be integral to shaping the IKA’s policy, practice, and advocacy, ensuring the patient voice remains at the core of the IKA’s mission, both now and in the future.
The Forum will consist of no more than 35 members, comprising of voting and non-voting members. Voting members will include one representative from each of the 25 branches of the IKA and IKA key patient-focused staff. These representatives may be kidney patients or family members / carers of kidney patients. Non-voting members will include the CEO of the IKA, a facilitator for operational purposes and expert advisors as needed. The Forum is led by a Chair, supported by a Deputy Chair. At least 51% of the members must be patients, with representation from both dialysis and transplant patients. Non-members may be invited to the Member Forum for a specified period / purpose if needed. This must be ratified by a vote with details agreed in advance. This might include experts in a particular field. If there are more than 35 potential members at any time, forum members will decide how to best achieve maximum of 35 members. If members cannot agree, the Chair of the Member Forum will consult the IKA CEO and Board Chair to reach a decision.
When it created the National Member Forum, our Board granted voting rights to a few key, patient-facing staff roles to ensure a strong link to IKA for support and accountability. The relevant staff members are our Patient Services Manager, National Advocacy Manager, and the National Volunteer and Organisation Development Manager. The CEO is also member but does not have a vote. These members bring essential, broad knowledge of patient issues, the Irish healthcare system, and previous IKA campaigns. They represent a small proportion of the Forum membership. In October 2026, the Forum members voted to appoint IKA staff as Secretary of the Forum. Once established, the Forum’s voting members can propose changes to its membership structure and operations.
No. The requirement is that representatives must have extensive lived experience with kidney disease services in Ireland. This can include family members or carers of kidney patients, who can offer a unique perspective on the patient experience. However, at least 51% of the Member Forum must be made up of patients (as distinct from family members or carers).
Yes. at the moment, branches can nominate a member who is also a Board Director.
Under the National Member Forum Terms of Reference which were approved by our Board, there is a requirement that the Member Forum meets every two months during the initial set-up phase. Once the Member Forum is up and running, and enshrined in our Constitution, the requirement reduces to meetings every 3-4 months. Once established, the Forum’s voting members can propose changes to its operations and structure, including in relation to how often the Forum should meet.
There is currently no restriction preventing branch officers or peer supporters from also serving as branch representatives on the Member Forum. The Member Forum Terms of Reference (which governs how the Forum will operate) does state that a maximum of 14 voting members can hold another formal IKA role (such as Director, Branch Officer or Peer Support Volunteer), however, this rule will only take effect after the Forum is fully established and enshrined into our Constitution following a full member vote. Therefore, there is no barrier to putting yourself forward as a nominee at this time. Once established, the Forum’s voting members can propose changes to its operations and structure, including in relation to how often the Forum should meet.
At the 2026 AGM held on 4 July 2026, IKA members voted to enshrine the Member Forum into our Constitution. This will guarantee its long-term stability by safeguarding the Forum into the future.
The Forum is made up of representatives from each of our 25 branches nationwide. One of the requirements to be a representative is that you must have extensive lived experience using kidney disease services in Ireland. This includes kidney patients and family members or carers of kidney patients. However, at least 51% of the Member Forum must be made up of patients (as distinct from family members or carers). In addition, under the new Board structure which was approved at the 2026 AGM and will come into effect after the 2027 AGM, our Member Forum can appoint six of its members to the IKA Board. This will ensure the patient voice remains at the heart of our governing Board.
At the 2026 AGM, IKA members approved some changes to our Constitution which included changes to our Board structure. Under the new structure, the Board will be made up of eleven directors, six of whom will be nominated by the voting members of the National Member Forum, ensuring representation from across the country. The other five will be appointed by the Board. We are currently in a transition period where our current Board will work alongside our Member Forum-appointed Directors. Our new Board structure will take effect after the 2027 AGM. You can learn more about the Constitutional changes approved at our 2026 AGM at ika.ie/AGM