The SUPPORT ORGANISATION FOR TRISOMY (S.O.F.T.) was founded in Ireland in 1991 as a voluntary group dedicated to providing support for families of children born with the chromosomal disorders – Patau’s Syndrome or Trisomy l3 and Edwards’ Syndrome or Trisomy 18.
One in four of all pregnancies ends in miscarriage and a high proportion are thought to be caused by a chromosomal disorder. A high proportion of trisomy 13 and trisomy 18 pregnancies end in miscarriage within twelve weeks of conception. It is therefore quite rare for such a pregnancy to continue to full term. The incidence of trisomy 13 is about 1 in 5,000 of total births while that of trisomy 18 is about 1 in 2,500 of total births.
Support is provided during prenatal diagnosis, during the child’s life and after the child’s passing.
SOFT puts families in contact with one another, provides information, funds bereavement counselling, funds respite assistance, publishes the SOFT booklet Why Our Baby and a newsletter, organises conferences and arranges professional speakers, do fundraising through various events and links with S.O.F.T. organisations worldwide.
Babies have been born with Trisomy 13 and 18 since the beginning of time, but it was only in 1960 that Dr. Patau and Dr. Edwards identified the respective features of the syndromes. Both syndromes are the result of an extra 13th or 18th chromosome respectively being present in each cell in the body. Different variants of these syndroms also exist, but are less common.
Concern Worldwide works with the world’s poorest people to transform their lives.
We are an international humanitarian organisation dedicated to tackling poverty and suffering in the world’s poorest countries.
We work in partnership with the very poorest people in these countries, directly enabling them to improve their lives, as well as using our knowledge and experience to influence decisions made at a local, national and international level that can significantly reduce extreme poverty.
The Mater Foundation was established in 1985 as the official fundraising body of The Mater Misericordiae University Hospital.
It exists to inspire and enable financial support from the community for exceptional patient care at The Mater Misericordiae University Hospital.
Funds raised through the Mater Foundation are used to purchase state-of-the-art equipment, enhance facilities and to ensure that all patients at the hospital are cared for in a restful, healing and comfortable environment.
Working closely with healthcare professionals, hospital management, our donors and volunteers, the Mater Foundation makes possible the investment of the community in its own healthcare.
St. James’s Hospital Foundation (the Foundation) processes and disburses donations received by St. James’s Hospital and fundraises for the hospital. All privately given funds are used to buy equipment, enhance the amenities and environment of the hospital and provide for staff education and research – all aimed at providing world-class care for the maximum number of patients.
While being resourced by the hospital, the Foundation is established as a separate legal entity to the hospital to ensure the integrity of its operations and in particular its financial operations.
The mission or purpose of Spina Bifida Hydrocephalus Ireland is to provide information, support and advice to people with Spina Bifida and/or Hydrocephalus, their parents and carers, as well as to promote social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society.
Sightsavers works to combat blindness in developing countries, restoring sight through specialist treatment and eye care. We also support people who are irreversibly blind by providing education, counselling and training. We help the people who need it most – those living in poverty in some of the world’s poorest countries.
To empower African eye surgeons to stay in Africa and work towards eradicating needless blindness.
Through advocacy, research and targeted treatment programmes Right to Sight develop sustainable local expertise in high volume, affordable eye care services.
To eliminate needless blindness in Africa by securing a sustainable supply of African eye surgeons and providing easily accessible, affordable eye care to all.
Established in 2003, Plan Ireland is a child-centered community development organisation, part of Plan International which itself was founded over 75 years ago. It is an independent organisation with no religious, political or governmental affiliations.
Plan is one of the oldest and largest international development agencies in the world. It currently works in 50 developing countries across Africa, Asia and the Americas directly supporting more than 1,500,000 children and their families, and an estimated 9,000,000 others living in communities working with Plan.
Plan Ireland receives tremendous support from the Irish public, over 8,500 of whom sponsor children.
To improve diagnosis and education of ovarian cancer within Ireland, through sharing global research and best practice, and providing support and advocacy through OvaCare’s dedicated support network.
ORBIS Ireland — Saving Sight, Rebuilding Lives
ORBIS Ireland is a charity working to eliminate preventable blindness and restore sight to rural villagers in the poorest regions of southern Ethiopia by 2015. Over a third of children in Ethiopia are affected by trachoma, a blinding, yet completely preventable eye disease. If left untreated this slowly progressive and painful disease robs its victims of their sight, their childhoods and ultimately their lives.
The Neurofibromatosis (Nf.) Association of Ireland is committed to securing an excellent medical service, accurate information, guidance, support and counselling services for all Nf sufferers and their families also to the promotion of research aimed at finding a cure for the condition.
NeriClinics is an Irish based registered charity. Our first project is to provide an accessible primary care health service to the identified community in great need in the Linda compound, Lusaka, Zambia.
This is a compound with a population estimated between 35,000 and 40,000 though no official figure exists. It had no dedicated health clinic prior to our arrival. Up to this point patients would walk for between 5 and 20 kilometres to avail of any health care. Inevitably these health clinics were understaffed and ill-equipped to meet the demands required of them. The plight of Linda’s community was highlighted by Irish Missionaries (the Mercy Sisters) based in the compound to one of our members. A group came together from varied backgrounds united in a common goal to form a charity that would make a difference and save lives in the Linda compound. On 26th April 2008 Neri Clinics was formed and had our first meeting. We aim to provide a sustainable health service with heavy involvement of the community. With this in mind we have secured the services of the eminently qualified Zambian doctor, Dr. Patrick Chikuta and Zambian nurse Mr. Moses Chisenga.
Significant time has been invested in developing relationships with the regional community health management teams to allow us to work in conjunction with and with the full backing of the Zambian Ministry of Health. Ties have been developed formally and informally with the local group Zukas-Linda Community Trust who will assist with developing community based care programmes as well as bringing health issues to the fore in the community
The Mid-Western Cancer Foundation was founded by Professor R. K. Gupta, Consultant Medical Oncologist and Director of Cancer Services at the Mid-Western Regional Hospital, Limerick. Our aim is to streamline donations and provide holistic care for patients with Cancer in the Mid-West region, in addition to the ongoing research support.
The Mercy Hospital Foundation raises awareness and funds for the Mercy Hospital. Our mission is to support the hospital in delivering the highest quality of care to its patients.
We promise to support advancements and innovation in the treatment and care of patients at The Mercy Hospital, the People’s Hospital.
The Irish MPS Society is a voluntary support group which represents and supports children and adults suffering from Mucopolysaccharide and related diseases, their families, carers and professionals.
It is a registered charity, managed by the members themselves, and entirely supported by voluntary donations and fundraising.
The aims of the Irish MPS Society are as follows:
-to act as a support network for those affected by MPS and related diseases
-to bring about more public awareness of MPS and related diseases
-to promote and support research into MPS and related diseases
The Irish Society for Colitis and Crohn’s Disease (ISCC) is a patient support group for people who are living with ulcerative colitis and Crohn’s disease (collectively known as Inflammatory Bowel Disease or IBD), also their families and friends. Founded in 1984, we provide information and advice, telephone support, and organise public meetings nationwide at which lectures are given by gastroenterologists, surgeons, dieticians and other healthcare professionals. We also organise informal events and activities for younger members including an annual Youth Day ‘Huddle’ in November.
We are a member of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA).
The Irish ME Trust was established in 1989 to provide information and a counselling service to those affected with ME as well as targeting individual problems on behalf of sufferers. We aim to create awareness in the general public and the medical profession as to the plight of ME sufferers in Ireland and contribute to quality biomedical research studies.
ME is a serious and potentially disabling chronic physical disorder, affecting up to 12,000 people in Ireland. Of that number, approximately 25% of those would be considered to be severely disabled, rendering them housebound and even bedbound and leaving the individual dependent upon carers for their everyday needs.
ME has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969, although history has shown that this classification does not suit everybody. The renaming in the US of ME to Chronic Fatigue Syndrome (CFS) has led to loosening of the criteria for diagnosis and inconclusive research studies.
We believe that the best hope of achieving definitive diagnostic markers and subsequent tailored treatment protocols is for healthcare professionals and researchers to embrace the Canadian Consensus Document for ME/CFS and to strive to develop subgroups for research.
To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment which works for all sufferers. It is only through quality research that progress can be achieved in these areas.
HDAI exists to provide a unique service offering information, support and advocacy to all those affected by HD
HDAI organisaton and structure
HDAI is a national voluntary organisation established by HD family members to provide consultation, information and individualised support to those diagnosed with Huntington’s Disease, those at risk, family members and health care professionals. Confidentiality is guaranteed. The Association was formally launched in 1985 and was incorporated in 1998. HDAI is a Registered Charity CHY 10130, financed through statutory sector grants and the generosity members and friends. HDAI employ a Director of Information and Services Coordinator and a Family Support Officer. HDAI is situated in the gate lodge of Carmichael House, North Brunswick St., Dublin 7 and is a member group of the Carmichael Centre.
HDAI’s management committee is elected by the membership at each AGM. The committee work as a group and meet at least once a month to discuss future plans for HDAI and take decisions on queries that arise. Our Annual General Meeting takes place in June in Cuisle Respite Centre, Co. Roscommon. All members are invited to attend. Audited financial statements are produced annually and are available from our office on request.
Michael D Higgins, President of Ireland has been patron of HDAI since his inauguration in 2011.
Our mission is to support children who suffer from congenital heart defects and their parents and families. We also try to support bereaved families whose children have died from CHD.
Our aims include the setting up of local groups, the purchase of medical equipment, financial assistance to families, the funding of specialist posts and special events for the children and their families.
We hope to raise awareness of congenital heart defects in the general public, as it is the most common of all birth defects. We will endeavour to get the best treatment and facilities for children with CHD and their families, and to do this we will continue to lobby those in power to secure better treatment and facilities and to highlight deficiencies in the existing service.
The Burren Chernobyl Project (BCP) was established in 1993 to help with the child victims of the fallout from the Chernobyl reactor explosion. Many projects have been carried out to assist the children and their families who are enduring the effects of exposure to radiation and the other social and economic problems facing them in Belarus.
The National Breast Cancer Research Institute (NBCRI) is a voluntary based charity located at the Clinical Science Institute, University College Hospital, Galway.
Launched in 1991, the key objective of the National Breast Cancer Research Institute is to conduct relevant, ethical research into the biology of breast cancer, to determine the cause of this disease and improve the treatment for patients. The National Breast Cancer Research Institute also work to raise awareness of breast cancer and fundraise to provide improved breast cancer services for women throughout Ireland.
Over 2000 new cases of breast cancer are diagnosed in Ireland each year. As yet breast cancer cannot be prevented, its incidence can only be reduced by early detection. The cause and mechanism of action of breast cancer remain unknown. Treatments are available for breast cancer but ongoing research is essential to ensure the optimal treatment for all patients, to reduce their side effects, improve their quality of life and, primarily, increase their chance of survival.