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Rare diseases advocacy

Rare diseases advocacy content

Fighting Blindness works with many other rare disease groups as part of our advocacy work in this area. Collectively we are a powerful lobbying group that has been successful in affecting significant change to health policy and care for people living with rare diseases.

Rare Diseases Ireland (RDI)

Fighting Blindness has been a member of Rare Diseases Ireland (RDI) since the group was established in 1988. RDI is the national alliance for rare diseases in Ireland and its objective is to represent the voice of those who have a rare disease or are at risk of developing a rare disease. Through the work of RDI we speak in a united voice with other patient groups to advocate for better outcomes for people living with a rare disease. Some key priorities include access to genetic services, access to medicines and access to community services. For more information visit their website here.

Rare Disease Taskforce

The Rare Disease Taskforce, formed in 2011, is made up of three umbrella groups – the Medical Research Charities Group (MRCG), Rare Diseases Ireland (RDI) and the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI). The Taskforce brings these organisations and their members together to work collaboratively to ensure that the needs of rare disease stakeholders are met and that the recommendations of the National Rare Disease Plan are fully implemented.

EURORDIS – Rare Diseases Europe

EURORDIS are the European Rare Diseases Organisation. It is a non-governmental patient-driven alliance of patient organisations representing 826 rare disease patient organisations in 70 countries. Fighting Blindness has been a member of EURORIDS since it was established in 1997.

EURORDIS is widely recognised in Europe for its achievements and as a main partner working with the European Commission, the European Parliament, European Medicines Agency, and many other stakeholders. It brings together all stakeholders and mobilise the rare disease community to strengthens the patient voice and shape research, policies and patient services. Rare Diseases Ireland, the Irish national alliance for rare diseases, is represented at the EURORDIS Council of National Alliances.

For more information visit their website here.