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Collaborative advocacy

Collaborative advocacy content

Collaboration with other groups is an integral part of our advocacy strategy, as we work together on common goals and challenges to benefit our members and communities.

Fighting Blindness has been influential in the development of several umbrella organisations at a national level, such as Rare Diseases Ireland (formerly the Genetic and Rare Disorders Organisation), the Medical Research Charities Group (MRCG), the Irish Platform for Patients’ Organisations Science and Industry (IPPOSI), and the Vision Impaired Service Providers Alliance (VISPA). We are also members of the Rare Disease Taskforce and the Disability Federation of Ireland (DFI).

At an international level Fighting Blindness is a member of the European Rare Disease Organisation (EURORDIS) and Retina International. Through these groups we work closely with patient organisations in other countries to raise awareness and influence policy at a European level.

Below is a brief description of the organisations we work with, at a national, European and international level.

Rare Diseases Ireland (RDI)

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. For more information visit www.rdi.ie.

The Medical Research Charities Group (MRCG)

The MRCG is an umbrella group of medical research and patient support charities, representing the joint interests of charities that specialise in restoring health through medical research, diagnosis and treatment and, where possible, the prevention of disease. The MRCG believes that today’s health research is tomorrow’s healthcare. For more information visit www.mrcg.ie.

Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI)

IPPOSI is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health innovation. For more information visit www.ipposi.ie.

Rare Disease Taskforce

The Rare Diseases Taskforce was set up by the MRCG, RDI and IPPOSI. It brings together patients, patient organisations, industry representatives and researchers, with the aim of supporting the development and implementation of an effective National Plan for Rare Diseases.

Vision Impaired Service Providers Alliance (VISPA)

In 2007, Fighting Blindness joined with Irish Guide Dogs, NCBI and ChildVision to form the Vision Impaired Service Providers Alliance (VISPA). VISPA is a collective voice to advocate for better service delivery for people affected by sight loss in Ireland.

Disability Federation of Ireland (DFI)

DFI is the national umbrella body for Ireland’s main organisations of and for people with disabilities. The growing membership now numbers some 66 organisations who provide a comprehensive range of services to people with a disability. For more information visit www.disability-federation.ie.

Rare Diseases Europe (EURODIS)

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 864 rare disease patient organisations in 70 countries. They are the voice of 30 million people affected by rare diseases throughout Europe. For more information visit www.eurordis.org.

Retina International

Retina International (RI) is a patient-led, global, umbrella NGO for patient-led groups around the world focused on research and support for rare and common retinal diseases. For more information visit www.retina-international.org.