Join the NHS Organ Donor Register – call: 0845 60 60 400 or visit http://www.uktransplant.org.uk
This list provides a limited selection of links to organisations involved in organ donation and transplantation in the UK and overseas. It is not intended to be a definitive list – but to point you in the right direction to help you get further information. Do let me know if you find the links useful, if any no longer work, or if there are any you think should be added.
Information & Support
The national organisation overseeing the allocation of donated organs, and providing information about organ donation and transplantation. The site includes the organ donation register.
Transplant Support Network
A nationwide network that offers support to patients, families and carers of organ transplants, by contact with someone who has undergone the process.
Grown up Congenital Heart Association (GUCH)
A charity, supported by the British Heart Foundation, to provide information and support for young people and adults who were born with a heart condition, and their families.
“To transplant and beyond” – John Fisher has set up a website based on his experience of a heart transplant in 2000, with information, message board and contact details.
British Heart Foundation
The BHF is the largest independent funder of heart research in the UK. They play an important role in funding education, reaching the public and health professionals, and provide life-saving cardiac equipment and support for rehabilitation and patient care.
Health Talk On-line
Health Talk On-linewas set up to give people a wide variety of personal experiences of health and illness, giving information on treatment choices and where to go for support. It has modules for parents of children with congenital heart disease, those facing heart failure and possible transplant, and will include further modules on other organ transplants.
Young Hearts was founded by parents of heart children. They say “When we faced what perhaps you are facing now, we felt overwhelmed and found many things difficult to understand. It wasn’t easy to find all the correct information to better support our children. To save others going though what we went through we decided to set up Young Hearts.”
The Children’s Heart Federation
The Children`s Heart Federation is dedicated to helping children with congenital or acquired heart disease and their families in the UK and Ireland. It is a parent-led charity consisting of 19 organisations, all of which are registered charities, whose main aim is the support of families of children with heart conditions.
HeartLine is a voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be.
A christian spiritual support group for all who face the trauma of heart transplant or any other major heart illness.
The British Cardiac Patients Association
The British Cardiac Patients Association was founded in 1981 at Papworth Hospital, to offer help, support, reassurance and advice to cardiac patients, their families and carers. The Association has a telephone help line, one-to-one advice and support groups, and a magazine. The Association represents cardiac patients on Government and NHS groups. The magazine is used by the medical profession to keep patients up-to-date on cardiac issues.
Heart Transplant Families Together
Transplantation is the last hope for many children suffering from congenital, genetic or viral heart conditions and cystic fibrosis. The process has a profound effect on the physical, emotional and psychological well-being , not only of the child, but the entire family.
HTFT is the only nation-wide group which helps families through what can be a very isolating experience. It is traumatic to be told that your child has an illness and that a heart or heart lung transplant is one of the options. It is at this time that the support from someone with first hand knowledge of the stresses that can suddenly become part of family life is so often welcome.
Donor Family Network
The Donor Family Network is run by donor families for donor families. The Network has two main aims, the support of donor families and the promotion of organ and tissue donation.
British Organ Donor Society
This site covers topics on organ donation and transplantation, both in the UK and Worldwide.
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British Thoracic Society
The British Thoracic Society (BTS) was formed in 1982 by the amalgamation of the British Thoracic Association and the Thoracic Society. It has grown over the last few years to include medical practitioners, nurses, scientists and any professional with an interest in respiratory disease. In January 2005 there were 2560 members.
The British Lung Foundation
Was established by a group of lung specialists from London’s Royal Brompton Hospital in 1985. It has maintained strong links with the medical profession, and aims to support people affected by lung disease through the individual challenges they will face. Support is the focus of many of our activities, including our nationwide network of Breathe Easy patient support groups and Baby Breathe Easy parent support groups.
The International Society for Heart and Lung Transplantation
The International Society for Heart and Lung Transplantation was created in 1981 by 15 cardiologists and cardiac surgeons. Today we have over 2200 members from over 45 countries, representing over 10 different disciplines involved in the management and treatment of end-state heart and lung disease.
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Addenbrookes Hospital http://www.addenbrookes.org.uk
Freeman Hospital, Newcastle http://www.newcastle-hospitals.org.uk/directorates/cardiothoracic-services
Great Ormond Street Hospital, London (children) http://www.gosh.nhs.uk/medical-conditions/clinical-specialties/heart-lung-transplant-information-for-parents-and-visitors/?locale=en
Papworth Hospital, Cambridge http://www.papworthpeople.com
Queen Elizabeth Hospital, Birmingham http://www.uhb.nhs.uk
Royal Brompton and Harefields NHS Trust, London http://www.rbht.nhs.uk
Wythenshawe Hospital, Manchester http://www.transplant-online.co.uk
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Give the gift of life. Join the NHS Organ Donor Register. Organ Donor Line 0845 60 60 400 http://www.uktransplant.org.uk/
Right now more than 8,000 people in the UK need an organ transplant that could save or improve their life. But each year around 400 people die while waiting for a transplant.
If you want to help someone live after your death, sign up to the register now. Click here to find out more.