There are a number of rare conditions that could not be listed on main condition specific help page due to the number of rare conditions that exist. Below we have provided links to organisations who may provide general guidance and support for those who have a rare condition.
This platform is a dedicated space for carers, families, and anyone affected by rare diseases — providing information, real stories, practical resources, and emotional support.
Link to Website: https://caringwithrare.org/
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.
Link to Website: www.eurordis.org
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. They provide a range of resources including a tool kit, webinar archives, documentaries and patients stories.
Link to Website: www.globalgenes.org
The National Clinical Programme for Rare Diseases was established on the 2nd December 2013, as a joint initiative between the Clinical Strategy and Programmes Division within HSE and the Royal College of Physicians of Ireland.
Link to Website: https://www.hse.ie/eng/about/who/cspd/ncps/rare-diseases
NIRDP are a not-for-profit organisation (recognised by HMRC as a charity), 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.
Their aim is to work constructively with stakeholders and service delivery organisations to find practical ways of improving the quality of life, treatment and care for those with rare diseases in Northern Ireland.
To achieve this, they work closely with the DHSSPSNI, Health and Social Care Board, Public Health Agency and the Patient Client Council in Northern Ireland, with RDUK, and with IPPOSI, MRCG and GRDO in the Republic of Ireland.
Link to website: www.nirdp.org.uk
Orphanet is the reference portal for information on rare diseases and orphan drugs (drugs developed to help a very small percentage of people), for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Link to website: www.orpha.net
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.
Link to website: www.rarediseaseday.org
Rare Diseases Ireland (formerly GRDO – the Genetic and Rare Disorders Organisation) is a non-governmental organisation with the mission to act 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 diseases.
Link to Website: https://rdi.ie/
The National Rare Disease Information Service provides current and evidenced based information on rare conditions and signposts to available rare disease expertise in Ireland and Europe
The information service assists:
We provide information on:
Link to website: https://www.hse.ie/eng/services/list/5/rarediseases/nrdo-rare-disease-information-service.html
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.
Link to Website: www.rarechromo.org
