We believe that working with like-minded stakeholders can expedite the achievement of all of our objectives. As Ireland is a small country, it is vital that we work together. Toward this end, Fighting Blindness has been influential in the development of several umbrella organisations such as the National Vision Coalition, the Genetic and Rare Disorders Organisation (GRDO), the Vision Impaired Service Providers Alliance (VISPA), the Medical Research Charities Group (MRCG) and the Irish Platform for Patients’ Organisations Science and Industry (IPPOSI).
As research yields results and the road to therapeutic development begins to emerge, patient groups need to work internationally. As so much policy regarding healthcare and research development is decided at the EU level, Fighting Blindness must remain aware of developments, and our members’ voices must be strong in the European Commission. Fighting Blindness first became involved with Retina International, the umbrella association made up of patient groups from all over the world that fund and support research into retinal degenerative conditions. Fighting Blindness was also a founding member of the European Platform for Patients Organisations, Science and Industry (EPPOSI) and among the first members of the European Organisation for Rare Diseases (EURORDIS). Through our involvement with Retina International, we take part in the European Patients’ Forum (EPF).
Below is a list of the organisations we work with, at a national, European and international level.
National Vision Coalition
The National Vision Coalition is a multi stakeholder group created by Fighting Blindness and the NCBI along with healthcare professionals, patient representatives and people working in vision-related advocacy and healthcare. The aim of the National Vision Coalition to ensure the development and implementation of a National Vision Strategy for Ireland.
In 2007, we joined with The Irish Guide Dogs for the Blind, 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.
GRDO is the Irish national alliance for people living with rare diseases. It is a non-governmental organisation representing the views and concerns of individual patients who don’t have a patient group of their own, as their condition may be so rare that they do not know of anyone else affected by it. It also represents patient-led and voluntary organisations in the field of rare diseases. GRDO acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic and other rare diseases are protected. GRDO is represented on the government-appointed national steering committee to work with stakeholders on the publication of a national plan for rare diseases by 2014. GRDO was established in 1988 and celebrated its 25th anniversary in 2013.
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.
IPPOSI is a unique partnership that aims to build dialogue throughout Ireland. This patient-led platform provides a structured way of facilitating interaction between membership groups (and, where possible, with State Agencies) on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
Retina International (formerly known as the International Retinitis Pigmentosa Association) is a voluntary charitable umbrella association of 33 national societies, each of which is created and run by people with retinitis pigmentosa (RP), Usher Syndrome, macular degeneration and other allied retinal dystrophies, along with their families and friends. Their main objective is to promote the search for cures for these conditions.
EPPOSI was founded in 1994 as an independent, not-for-profit, partnership-based and multi-stakeholder think tank based in Brussels, Belgium. Its goal is to work at the “cutting edge” of European health policy-making, providing members and the wider public with high-quality independent research and capacity-building knowledge exchange with the aim of bridging the gap between innovation and public health. In order to fulfill its mission and build on an established, unique, citizen-centric and multi-constituency approach, EPPOSI enables consensus-driven, equally-weighted outcomes between the different stakeholder groups of its membership: patients’ organisations, science and industry. EPPOSI is open to members from EU-facing umbrella patients’ organisations, commercial enterprises and their related trade bodies, research institutes and professional and business federations. Associate membership is open on nomination to NGOs representing a broad range of civil society interests, foundations and international organisations which support the EPPOSI ethos and are active in healthcare.
EURORDIS is the voice of 30 million people affected by rare diseases throughout Europe. EURORDIS is a non-governmental, patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 500 rare disease patient organisations in nearly 50 countries, covering more than 4000 rare diseases. EURORDIS supports the creation and development of rare disease national alliances, as well as disease-specific European federations and networks. EURORDIS was founded in 1997 and is supported by its members and by the AFM – Téléthon, the European Commission, corporate foundations and the health industry.
EPF is the umbrella organisation of 55 pan-European patient organisations active in the field of European public health and health advocacy. EPF was founded in 2003 to become the collective patients’ voice at EU level, manifesting the solidarity, power and unity of the EU patients’ movement. EPF’s vision is high-quality, patient-centred, equitable healthcare for all patients throughout the European Union. EPF facilitates the exchange of good practice and the challenging of bad practice on patients’ rights, equitable access to treatment and care, and health-related quality of life between patient organisations at the European level and member-state level.