Our Members
Health Research Charities Ireland has approx. 40 charities member charities. Together, they represent well over 1 million people across Ireland. Our members range from large research funding charities to small, voluntary-run patient organisations. They span many areas of health, including rare diseases, childhood illnesses, dementia, mental health, and many forms of chronic illness and disability. All have a strong focus on health or social care research.
The members of HRCI invested more than €15 million in research in 2019 (for context, that is one third of the annual HRB budget) and every extended family in Ireland is connected to at least one of these organisations. Beyond financial investment, they ensure the relevance of research to the communities they represent, communicate its findings and insist that it has impact for people. Together these charities provide a beautiful example of what research means to people and families and how the impact of research reaches every village in Ireland.
Note: while we frequently use the terms patients, due to our strong focus on health research, some of our members represent older adults, carers and other groups in society.
22q11 Ireland
The 22q11 Ireland Support Group was set up to provide help, support and accurate information to Irish families. 22q11 Deletion syndrome is a complex variable condition with over 180 different symptoms caused by a micro-deletion on the 22nd chromosome. No two persons with 22qDS will have exactly the same symptoms and some individuals will develop newer ones over time. https://www.22q11ireland.org/
Adelaide Health Foundation
The Adelaide Health Foundation is a voluntary charitable organisation which has as its principal object the advancement of healthcare. We deliver this through investment in nursing and medical education and health policy research. We also support patients and patient care in Tallaght University Hospital and in the local community. http://www.adelaide.ie/
All Ireland Institute of Hospice & Palliative Care (AIIHPC)
A collaborative of hospices, health & social care organisations & universities which advances education http://aiihpc.org/
Alpha One Foundation
The Alpha One Foundation was established in 2001 to promote research into Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the diagnosis, treatment, life expectancy and quality of life of people with this inherited condition. www.alpha1.ie
Alzheimer Society of Ireland
The Alzheimer Society of Ireland is the leading dementia specific service provider in Ireland. It is a national voluntary organisation that aims to provide people with all forms of dementia, their families and carers with the necessary support to maximise their quality of life. www.alzheimer.ie
Arthritis Ireland
Arthritis Ireland is the only national charity dedicated to improving the quality of life for people of all ages with arthritis www.arthritisireland.ie
Breakthrough Cancer Research
Breakthrough Cancer Research funds the efficient and effective development of new treatments for cancer. We work to significantly impact the number of people who can survive this disease. www.breakthroughcancerresearch.ie
Breast Cancer Ireland
Breast Cancer Ireland is a charity registered in Ireland, triple locked for governance and transparency to raise funding to support pioneering research and provide education and awareness on the importance of good breast health to women of all ages in Ireland.
www.breastcancerireland.com
Cardiac Risk in the Young (CRY Ireland)
CRY (Ireland) is an all-island charity, dedicated to supporting families bereaved through the loss of a young person from sudden cardiac death (SCD). It was established in 2002. CRY Ireland provides access to free cardiac screening and assessment at its Centre at Tallaght University Hospital, Dublin for families who have lost a young person or who are affected by or at risk from inherited conditions that cause SCD and emotional support services in an empathetic environment and supporting research into the prevention of sudden cardiac death in collaboration with other likeminded bodies.
The Centre for Arthritis and Rheumatic Diseases (CARD)
CARD rheumatology at St Vincent’s University Hospital is a EULAR Centre of Excellence for research and education. Our main focus is on patients with early, inflammatory arthritis eg. rheumatoid / psoriatic and vasculitis eg. Giant Cell Arteritis. We aim to provide patients with state-of-the-art treatment and information about their conditions. Our key scientific focus is on understanding mechanisms of inflammation in rheumatic diseases, with a view to providing the most relevant treatment to individual patients https://arthritissvuh.com/
Central Remedial Clinic
Working together to make a positive difference to the lives of people with disabilities, their families, and carers. https://www.crc.ie/
CFNCRF - Conor Foley Neuroblastoma Cancer Research Foundation
The Conor Foley Neuroblastoma Cancer Research Foundation was set up after
we lost our son Conor to this disease. Conor did a lot for research in the latter
years of his life by participating in new drug trials and allowing his tumour
samples to be collected and used for research. As very little developments in
new agents or survival rates had changed in the 10 years that Conor was cancer
free, we decided to continue Conor’s legacy in research to hopefully one day be
a part of a team that finds a cure for this horrible childhood cancer. http://foleye5.wixsite.com/conor-foley
Childrens Health Foundation
Children’s Health Foundation raises vital funds to support sick children and their families in Children’s Health Ireland hospitals and urgent care centres in Crumlin, Temple Street, Tallaght and Connolly https://www.childrenshealth.ie//
Cystic Fibrosis Ireland
Cystic Fibrosis Ireland was set up in 1963 to increase knowledge and awareness of CF and to give advice and support to people with Cystic Fibrosis and their families. http://www.cfireland.ie/
Cystic Fibrosis Registry of Ireland
The CFRI is a registry organisation which records, stores and analyses relevant data about the health and medical treatment of people with cystic fibrosis (CF) in the Republic of Ireland. By collecting and analysing information on all people with CF in Ireland, we can better understand their health and wellbeing, and the treatments they receive.
www.cfri.ie
Cystinosis Foundation Ireland
Cystinosis Foundation Ireland is an all volunteer, non-profit organisation dedicated to providing services and suppport for those in affected by Cystinosis. The Foundation also funds research into the causes and improved treatments of Cystinosis. www.cystinosis.ie
DEBRA
DEBRA Ireland is the national charity established in1988 to provide patient support services and to drive research into treatments and cures for those living with the genetic skin condition, epidermolysis bullosa (EB). http://www.debraireland.org/
Diabetes Ireland Research Alliance
Diabetes Ireland Research Alliance is a subsidiary of the Diabetes Federation of Ireland. It was set up to promote Ireland as a knowledge base for global diabetes research and increase the level of diabetes research being undertaken in Ireland.
https://www.diabetes.ie/research/what-is-research/dira/
Dystonia Ireland
The aims of Dystonia Ireland are to promote and encourage scientific research into the causes and treatments of dystonia, raise the level of awareness amongst the general public and the medical profession, offer support and information to all people with dystonia and their families nationwide. As the national support group for dystonia, we also represent the interests of our members with international support agencies and dystonia networks. http://www.dystonia.ie/
The Emer Casey Foundation
The Emer Casey Foundation was established after Emer’s death of uterine/ovarian cancer when she was only 28 years old. The Foundation aims to promote research into uterine/ovarian cancer, to raise standards of care for patients and to raise awareness of the disease. http://www.emercaseyfoundation.com/
Epilepsy Ireland
Epilepsy Ireland is committed to improving the lives of people with epilepsy in Ireland. Brainwave provides a wide range of services aimed at people with epilepsy, their parents, families and friends as well as raising epilepsy awareness and funding epilepsy research. http://www.epilepsy.ie/
Family Carers Ireland
FCI is a national membership charity for carers, working to improve supports, services, and recognition for anyone living with the challenges of caring for a family member or friend who is ill, frail, disabled, or has mental health difficulties. Through out network of 22 resource centres and 66 support groups we engage with approximately 20,000 family carers throughout the year. https://familycarers.ie/
Fighting Blindness
Fighting Blindness is an Irish patient-led charity funding & enabling world-leading research into treatments & cures for blindness. Through education and advocacy Fighting Blindness works to empower everyone in Ireland living with severe vision impairment. For more information, visit www.FightingBlindness.ie
Irish Cancer Society
The Irish Cancer Society aims to improve the lives of those affected by cancer, by providing up to date information and a range of services, by influencing change and raising awareness of cancer issues. www.cancer.ie
The Irish Heart Foundation
The Irish Heart Foundation is a national charity whose mission is to lead in improving the cardiovascular health of people living in Ireland so they do not experience disability or die from preventable heart, stroke and other blood vessel diseases. www.irishheart.ie
The Irish Kidney Association
The Irish Kidney Association is a national charitable voluntary organisation founded in 1978. It is a charity for patients led by patients. We are dedicated to meeting the needs of people living with and affected by end-stage kidney disease. These needs are spread across all aspects of life – medical, social, and psychological. The profile of the kidney patient ranges from infanthood to the elderly who are undergoing various methods of treatment: haemodialysis, peritoneal dialysis, and kidney transplantation.www.ika.ie
Irish Lung Fibrosis Association
ILFA is the national patient organisation supporting patients diagnosed with lung fibrosis, their families, and healthcare professionals working in respiratory medicine who have an interest in Lung Fibrosis. Our aim is to support patients, education, and research into lung fibrosis. www.ilfa.ie
Irish Thoracic Society
The Irish Thoracic Society is the official society for the broad spectrum of healthcare professionals involved in the care of people with chronic or acute respiratory disease in Ireland www.irishthoracicsociety.com
MSD Action Foundation
MSD Action Foundation and SavingDylan.com were established in 2015. To promote and support research advancements that will lead to improvements in clinical outcomes, life expectancy and quality of life for patients suffering from Multiple Sulfatase Deficiency. www.savingdylan.com/
MS Ireland
MS Ireland exists to enable and empower people affected by Multiple Sclerosis to live the life of their choice to their fullest potential www.ms-society.ie
Muscular Dystrophy Ireland
Muscular Dystrophy Ireland aims to provide information, advice and support to people with neuromuscular conditions and their families through a range of support services. http://www.mdi.ie/
National Children's Research Centre
Our goal is to facilitate research into the diagnosis, treatment and prevention of childhood diseases, through the award of research grants funded by the Children’s Medical Research Foundation(CMRF) www.nationalchildrensresearchcentre.ie
National Institute for Prevention & Cardiovascular Health
The National Institute for Prevention and Cardiovascular Health (NIPC) is an independent, not-for-profit organisation, established in 2014. It has a strategic partnership with the National University of Ireland, Galway and Croí, the West of Ireland Cardiac & Stroke Foundation. It is based at the Croí Heart and Stroke Centre, Moyola Lane, Newcastle, Galway, Ireland. https://nipc.ie/
PKU Association Ireland
The PKU Association of Ireland (PKUAI) is made up of a voluntary group of community members with the aim to assist and support those living with PKU and allied metabolic conditions in Ireland today. The PKUAI strive continuously for the best quality of care through raising awareness about the disease, advocating for more proactive and holistic lifelong care from diagnosis of newborns, continuing throughout childhood into older adulthood and providing a support network for our community. www.pku.ie
Retina International
Retina International (RI) is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related forms of retinal disease. Retina International is a registered charity in Ireland.
These rare diseases cause progressive degeneration of the retina – a thin layer of tissue at the back of the eye that is essential for vision. https://retina-international.org//
Rett Syndrome Association of Ireland
The Rett Syndrome Association of Ireland is an association of parents and families of people affected with Rett Syndrome and other related disorders. http://www.rettsyndrome.ie/
The Rotunda Foundation
The Rotunda Foundation is the official fundraising arm for the Rotunda Hospital. We raise funds to support the outstanding care delivered at the Hospital. Donations fund additional vital equipment, family and baby care initiatives and research. http://www.rotundafoundation.ie//
Royal Victoria Eye and Ear Research Foundation
The main function of the Research Foundation is to provide equipment and financial support to staff members at the Royal Victoria Eye and Ear Hospital. It also carries out Research Projects throughout the country for subsequent publication in the literature and presentation at Medical Conferences.
http://www.rveeh.ie/rveeh/departments/Research_Foundation.html
Sage Advocacy
The development of Sage Advocacy has been influenced by the scandals of Leas Cross in 2005, and Áras Attracta and Portlaoise Hospital in 2014. First established in June 2014 as a support and advocacy service for older people by the HSE, The Atlantic Philanthropies and Third Age, it was in 2016 asked to explore how it might address some of the more systemic issues relating to people with intellectual disabilities in the South-East. Sage Advocacy clg was established in September 2017 and on March 1st 2018 it assumed full responsibility for the governance and future development of the service. In July 2018 the patient advocacy services, previously provided by Patient Focus, moved to Sage Advocacy which is now a support and advocacy service for vulnerable adults, older people and healthcare patients.
https://www.sageadvocacy.ie/
Sickle Cell and Thalassaemia Ireland
Sickle Cell and Thalassaemia Ireland advocates for and supports Sickle Cell patients and their families. Since its foundation in 2012 SCTI projects include: educational programmes on Sickle Cell; training for physicians; supporting young people in disease management; provision of basics for children attending hospital; advocating for national screening programme.
http://sicklecellireland.ie/
St John of God Research Foundation
The Saint John of God Research works to promote and support the development of research strategies in the areas of Intellectual Disability, Adult Mental Health and Child and Adolescent Mental Health, in line with the Order’s research mission and national / international developments. http://www.sjog.ie/
St Patrick's Mental Health Services
St Patrick’s Mental Health Services is Ireland’s largest independent, not-for-profit mental health service. The hospital, in conjunction with the TCD School of Psychiatry and St. James’ Hospital have developed a vigorous and broad-based programme of clinical research over the past thirty years. www.stpatricks.ie
St Vincent's Anaesthesia Foundation
St. Vincent’s Anaesthesia Foundation is a Charity Trust , set up to support and promote the advancement of education & research in relation to Anaesthesia, Intensive Care & Pain Medicine. http://www.sedda.ie/
