The Ultra Rare Diseases, Disorders and Disabilities Foundation

Public benefits

Purpose 1 - support those people, their families, dependence and carers affected by or believe to be affected by Ultra rare diseases/Rare diseases or disorder and their disabilities caused by Ultra rare/rare Diseases in Northern Ireland and any part of the world. The direct benefits which flow from this purpose are increased comfort and support

for beneficiaries, improved services for beneficiaries and their families, dependents and carers. Purpose 2 - advance the education of the public in all matters concerning Ultra rare/rare diseases, disorders and disabilities. The direct benefits which flow from this purpose are increased public awareness of matters concerning Ultra rare/rare diseases, disorders and disabilities. These benefits will all be evidenced through feedback from beneficiaries, and the wider public. We believe that these purposes will lead to no clearly identified harm. The charity’s beneficiaries are those persons in Northern Ireland/Ireland affected by or believed to be affected by a Ultra rare/rare disease or disorder and its disabilities, and their families, dependents and carers. However the education of the public will be for the benefit of society in general. There is no identified private benefit for any of these purposes.

What your organisation does

The organization’s mission statement is to: eliminate the challenges of rare diseases and ultra-rare diseases by building awareness; providing support networks and resources to positively impact affected patients and families and; to support the families with counselling support and to build a centre of excellence for patients and their families.