The ‘organ donation family’ consists of many organisations and individuals who are passionate about sharing the message that organ donation saves and transforms lives, and helping to raise awareness of organ donation and the importance of signing the Organ Donor Register and sharing that decision with loved ones.
Local charities who promote organ donation as part of their work have been campaigning hard for many years. This is invaluable. The core work they deliver is also vital, from supporting patients and their families, through to research into the causes, prevention and possible cures for conditions.
On this page we shine a spotlight on the work of our organ donation charity partners.
The Royal Victoria Hospital Liver Support Group
The Royal Victoria Hospital Liver Support Group was founded in 1998 by Kay Duffy. Kay's husband had a successful transplant, and having recognised a lack of peer support for liver patients in the Province, she wanted to pass on what she had learned through this experience and help others suffering from liver disease, including those who needed to travel to England for assessments and liver transplants.
The charity is run exclusively by volunteers in NI who themselves are liver patients or who are family members of liver patients.
We provide confidential emotional support and practical non-medical advice for adults, adolescents and children who are coping with liver conditions, and their carers. The Liver Support Group has been set up to complement and extend the support already provided by clinicians to those challenged with liver conditions.
A member of the Liver Support Group describes the invaluable support received:
“On my journey with liver disease I came across the RVH Liver Support Group when attending outpatient appointments at the Royal Hospital. There was always a friendly face at the Helpdesk who had time to just say hello or answer questions.
After being listed on the transplant list was when the group really came into its own. There was always someone to talk to and answer questions about things like accommodation, flights, and also potential financial help.
The calls to my family during and after transplant were very reassuring and were greatly appreciated as there was a familiar voice on the other end of the phone. As a family we are indebted to the Liver Support Group for their continued support both in a practical sense alongside emotional support.”
Our committee understands the importance of involving our members. This allows us to grow as a group and help share a sense of not being on our own, as we as individuals and families journey through liver associated illness. We look to understand and empathise without prejudice, with those at all stages of health and readily share our experiences of the health journeys many of us have already travelled.
Our partners in the promotion of organ donation include the Public Health Agency and all the major Organ Donation Charities. We work actively throughout the year with initiatives helping to promote organ donation particularly with the co-ordinated multi-channel campaigns spearheaded by the PHA.
As we have insufficient resources within the Group's committee, we rely solely on personal donations and fundraising events organised by friends of the Group to provide the funding required to meet our care and support objectives for those in need.
To find out more about us and our work, to support us or to get involved, please follow us on:
Children’s Heartbeat Trust
Children’s Heartbeat Trust is a local charity that provides support to children, young people and families living with Congenital Heart Disease (CHD) in Northern Ireland. CHD is the most common birth defect in the world, and over 200 babies are born with CHD here each year. A small number of the children we support will require heart transplants with organ donation offering their only hope of survival. We know it can be hard to talk about organ donation and children, however we need to have these difficult conversations so that in the tragic instance of a child passing away, another child might be given the gift of life.
Children’s Heartbeat Trust are proud to support over 500 heart families each year who access our support services. The impact of having a baby with a complex heart defect can be overwhelming and affects everyone in the family. To meet these needs we offer a wide range of emotional and practical supports for heart children and teens, their parents and siblings. We also fund clinical equipment, research, and advocate for the voice of heart families to be at the centre of all congenital cardiology services.
For some children a heart transplant is their only hope. It is particularly difficult to find a donor for children in need of a heart, with one of the main difficulties being that matches are largely curtailed by heart size. Consequently, young patients face a wait for urgent heart transplantation that is more than two and a half times that of an adult patient.
Alongside many other charity partners, Children’s Heartbeat Trust has campaigned in support of the introduction of a statutory opt-out system for organ donation, and to raise awareness of the children and families who desperately need a heart transplant in Northern Ireland. We have focused on the children and families behind the statistics and you can watch some of their stories here.
We would like to thank all those involved in successful transplantations, who have transformed the lives of some of our most vulnerable heart children and families. But most especially of all, we wish to thank the donors and their families who have gifted life in the most heart-breaking of personal circumstances. They too are our heart warriors.
To find out more about us and our work please follow us on: