Due to the number of rare conditions that exist not all of them could be listed on main condition specific help Below we have provided links to organisations who may provide general guidance and support for people with a rare condition.
Genetic and Rare Disorders Organisation
The Genetic and Rare Disorders Organisation (GRDO) acts as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders. They wish to provide a strong voice for this cause in order to achieve better support and services.
Northern Ireland Rare Disease Partnership (NIRDP)
A non-profit organisation bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics. They work to find practical ways of improving the quality of life, treatment and care for those with rare diseases in Northern Ireland.
The Global Genes Project
Global Genes is one of the leading rare disease patient advocacy organisations in the world. The non-profit organisation promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. They provide a range of resources including a toolkit, webinar archives, documentaries and patients stories.
Rare Disease Day
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Unique is UK based charity offering operating on an international scale to help inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.
EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family