Irish Patient Organisations Supporting People With Sight Loss
NCBI – The National Sight Loss Agency
The NCBI is a not for profit charity, which offers support and services to people of all ages who are experiencing difficulties with their eyesight.
Irish Guide Dogs
Irish Guide Dogs for the Blind is Ireland’s national charity dedicated to helping persons who are blind or vision impaired and families of children with autism to achieve improved mobility and independence.
ChildVision provides educational opportunities for Ireland’s blind and partially sighted children and young adults.
Féach is a support group for parents of blind and visually impaired children.
MIST (Macular Impairment Support and Togetherness)
MIST provides support, advocacy and social / recreational activities for people with macular degeneration.
W: www.mistsupportgroup.wordpress.com T: 01 269 1921
Irish Patient Organisations
Diabetes Ireland provides support and education to all people affected by diabetes. It also raises public awareness of diabetes and its symptoms and funds research into finding a cure for diabetes.
Genetic and Rare Disorders Organisation (GRDO)
The Genetic and Rare Disorders Organisation (GRDO) is a non-governmental organisation which 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.
The Anne Sullivan Foundation for Deafblind People
The Anne Sullivan Foundation is a national organisation that was established to help low functioning deafblind children throughout Ireland.
Deafblind Ireland is an organisation set up by deafblind people, their families and professionals working in this specialist field. It seeks to raise awareness of the uniquely disabling consequences of the combined loss of sight and hearing and to provide a source of support for people who are deafblind and their families and information and guidance to professionals.
Irish Deaf Society
The Irish Deaf Society is the largest deaf-led organisation in Ireland working with both the deaf and hard of hearing community. Their work focuses on issues such as achieving equality and access for deaf people.
Irish College of Ophthalmologists (ICO)
The Irish College of Ophthalmologists (ICO) is the recognised training and professional body for medical and surgical eye doctors in Ireland. You can find your local ophthalmologist from the list on their website.
Association of Optometrists in Ireland
The Association of Optometrists Ireland is the professional representative body for the vast majority of practising optometrists in the country.
Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI)
IPPOSI is a unique partnership of patient groups/charities, science and industry on the island of Ireland. As a patient led partnership, the platform provides a structured way of facilitating interaction between the three key membership groups (patients’ organisations, scientists and industry – 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 in Ireland.
Medical Research Charities Group (MRCG)
The MRCG is an umbrella group of medical research and patient support charities. It represents the joint interests of charities specialising in restoring health through medical research, diagnosis and treatment and, where possible, the prevention of disease. The core belief of the group is that today’s health research is tomorrow’s healthcare.
Diabetic Retina Screen
The National Diabetic Retinal Screening Programme is a new, government-funded screening programme that offers free, regular diabetic retinopathy screening to people with diabetes aged 12 years and older.
Vision Sports Ireland
Vision Sports Ireland is a not for profit organisation that caters for visually impaired people of Ireland by providing sporting and recreational activities for its members throughout the country.
International Patient Organisations
RP Fighting Blindness
RP Fighting Blindness is a medical research charity that provides support and information to people in the UK affected by retinitis pigmentosa (RP) and related conditions.
Usher Syndrome Coalition
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
Sense is a national UK charity that supports and campaigns for children and adults who are deafblind.
Molly Watt Trust
The Molly Watt Trust was set up to make a difference to those living with Usher Syndrome. Their main focus is raising awareness of the condition and identifying items of equipment/technology that can enhance life with the condition.
Choroideremia Research Foundation
The Choroideremia Research Foundation Inc. is an international, non-profit organisation dedicated to raising funds to find a treatment or cure for choroideremia, a rare inherited retinal degenerative disease that causes blindness.
The LHON Society provides support and information to those in the UK who are affected by Leber Hereditary Optic Neuropathy (LHON), their families and health care professionals. In addition, they facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients.
The Macular Society is the national UK charity for anyone affected by central vision loss.
Retina International 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 allied retinal dystrophies, their families and friends.
Foundation Fighting Blindness
Foundation Fighting Blindness are a US medical research charity whose mission is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.
VisionAware supports adults who are losing their sight by providing information, daily living techniques, a directory of services and a supportive online community. The American Foundation for the Blind (AFB) and Reader’s Digest Partners for Sight Foundation launched VisionAware as a free, easy-to-use informational website for adults with vision loss, their families, caregivers, healthcare providers, and social service professionals.
European Rare Disease Organisation (EURORDIS)
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 633 rare disease patient organisations in 59 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.
RareConnect.org is an online social network for patients and families. It was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organisation for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. Communities for specific conditions are built in partnership with patient groups who help create, moderate and maintain the forum.
European Patients Forum
The European Patients’ Forum is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe.
Medical and Research Links
National Eye Institute (NEI)
The NEI is one of 27 institutes and centres of the US National Institutes of Health (NIH). The NEI leads the US government’s research on the visual system and eye diseases. It supports basic and clinical science programs for the development of sight-saving treatments.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
Vision Research EU
This “Gateway to European Vision Research” is a web-based portal service for the European vision research community and major stakeholders.
RetNet Retinal Information Network
RetNet provides tables of genes and loci causing inherited retinal diseases, such as retinitis pigmentosa, macular degeneration and Usher syndrome, and related information.