Useful Links

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.

W: www.ncbi.ie     E: info@ncbi.ie     T: 01 830 7033

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.

W: www.guidedogs.ie     E: info@guidedogs.ie      T: 1850 506 300 / 021 487 8200

ChildVision

ChildVision provides educational opportunities for Ireland’s blind and partially sighted children and young adults.

W: www.stjosephsvi.ie      E: info@childvision.ie     T: 01 837 3635

Féach

Féach is a support group for parents of blind and visually impaired children.

W: www.feach.ie      E: feachmail@gmail.com

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

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.

W: www.diabetes.ie      E: info@diabetes.ie      T: 01 842 8118 / 1850 909 909

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.

W: www.grdo.ie      E: info@grdo.ie      T: 086 022 9262

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.

W: www.annesullivan.ie      E: info@annesullivan.ie      T: 01 289 8339

Deafblind 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.

W: www.deafblindireland.ie      E: info@deafblindireland.ie

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.

W: www.irishdeafsociety.ie      E: info@irishdeafsociety.ie      T: 01 860 1878

Irish Resources

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.

W: www.eyedoctors.ie      E: info@eyedoctors.ie      T: 01 402 2777

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.

W: www.optometrists.ie     E: info@aoi.ie      T: 01 453 8850

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.

W: www.ipposi.ie      E: info@ipposi.ie      T: 01 479 0552

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.

W: www.mrcg.ie      E: info@mrcg.ie      T: 01 479 3234 / 085 142 6738

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.

W: www.diabeticretinascreen.ie     E: info@diabeticretinascreen.ie     T: 1800 45 45 55

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.

W: www.visionsports.ie      E: office@visionsports.ie      T: 01 647 2914 / 085 850 0193

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.

W: www.rpfightingblindness.org.uk

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.

W: www.usher-syndrome.org

Sense

Sense is a national UK charity that supports and campaigns for children and adults who are deafblind.

W: www.sense.org.uk

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.

W: www.molly-watt-trust.org

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.

W: www.choroideremia.org

LHON Society

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.

W: www.lhonsociety.org

Macular Society

The Macular Society is the national UK charity for anyone affected by central vision loss.

W: www.macularsociety.org

Retina International

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.

W: www.retina-international.org

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.

W: www.blindness.org

Vision Aware

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.

W: www.visionaware.org

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.

W: www.eurordis.org

RareConnect

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.

W: www.rareconnect.org/en

European Patients Forum

The European Patients’ Forum is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe.

W: www.eu-patient.eu

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.

W: www.nei.nih.gov

Clinical Trials.gov

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

W: www.clinicaltrials.gov

Vision Research EU

This “Gateway to European Vision Research” is a web-based portal service for the European vision research community and major stakeholders.

W: www.vision-research.eu

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.

W: www.sph.uth.edu/retnet