Northern Ireland Rare Disease Partnership

Public benefits

The three purposes of the charity as detailed in our governing document are -: 1. “To support and campaign on behalf of those persons in Northern Ireland (“the area of benefit”) affected by, or believed to be affected by a rare disease and their families, dependents, and carers” Those affected by rare disease, their families, dependents, and

carers will benefit from this purpose. The direct benefit that will flow from this purpose will be to improve the diagnosis, treatment, and support of such individuals. This benefit will be monitored and evidenced during the on-going periodic review of the recently launch “Northern Ireland Implementation Plan for Rare Diseases”. The DHSSPS have committed to 51 actions under this plan. We do not envisage that any harm will arise as a result of our pursuance of this purpose. We do not anticipate any private benefit accruing to the trustees or other unintended beneficiaries as a result of this purpose. 2. “To advance the education of the public and of relevant professionals and policy makers in all matters concerning rare diseases” The intended beneficiaries of this purpose are those affected by rare disease, their families, dependents and carers. Healthcare professional and policy makers will also benefit from being educated and made more aware of rare diseases, the impact of rare disease, and the needs of those affected by rare diseases. The direct benefit that will flow from this purpose will be to improve the diagnosis, treatment, and support of such persons. Education of professionals and policy makers will hopefully improve their knowledge of rare disease and assist them managing those affected and in strategically planning and implementing the services required. This benefit will also be monitored and evidenced during the on-going periodic review of the recently launch “Northern Ireland Implementation Plan for Rare Diseases”. The DHSSPS have committed to 51 actions under this plan. In time, we hope that rare disease groups will report an improvement in their care and management of their condition(s) in a more “joined up” way. We do not envisage that any harm will arise as a result of our pursuance of this purpose. We do not anticipate any private benefit accruing to the trustees or other unintended beneficiaries as a result of this purpose. 3. “To advance any other exclusively charitable purpose as the trustees may, from time to time, decide in accordance with the law of charity” The intended beneficiaries of any such future purpose would be those affected by rare disease, their families, dependents and carers. The direct benefit will not be known until such purposes are formulated. Any such purpose would always be to benefit our core group of beneficiaries. If additional purposes are adopted – then we would ensure that outcomes could be demonstrated, proven and evidenced. We would not adopt a purpose that would cause harm and we do not envisage adopting a purpose that would have any private benefit unless that benefit would be greatly outweighed by the public benefit

What your organisation does

We support and campaign on behalf of those persons in Northern Ireland ('the area of benefit') affected buy or believed to be affected by a rare disease and their families, dependants, and carers. We educate the public and relevant professionals and policy makers in all matters concerning rare conditions.