Links
Give the gift of life. Join the NHS Organ Donor Register. Organ Donor Line 0845 60 60 400 http://www.uktransplant.org.uk/register
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 | Sites for professionals | Transplant Hospitals in the UK | Personal Websites
Information & Support
UK Transplant
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.
Transplants in Mind
A charity run to promote awareness of organ and tissue donation for transplantation.
TIME actively promotes organ donation, co-ordinating volunteers and educational
activities.
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.
Heart-Transplant.co.uk
"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.
Live Life then Give Life
The Live Life Then Give Life Campaign has been created to raise awareness of organ donation and the chronic lack of organ donors in the UK. It aims to encourage people to show their support for organ donation by wearing one of the two T-shirts that have been produced especially for the campaign.
All proceeds from the sales of live life then give life T-shirts will go to TIME, a national charity that exists to raise awareness of organ and tissue donation.
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.
Dipex
Dipex was 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.
Transplant Sports
Association of Great Britain
A charity organising sports and social events for transplant recipients,
to show the benefits of transplantation and promote organ donation.
Young Hearts
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
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.
2 Hearts
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.
Talk Transplant.com
A UK website that aims to provide comprehensive information about organ
transplant to patients, their families and their carers.
Report a broken link here
Sites for Professionals
Julia
Polak Research Trust
The Julia Polak Research Trust was set up to support medical research into
ways of repairing or replacing damaged or diseased human organs and tissues,
mainly in the field of tissue engineering and regenerative medicine.
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.
Report a broken link here
Transplant Hospitals in the UK
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.ich.ucl.ac.uk/gosh/clinicalservices/Cardiac_services/Homepage
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
Report a broken link here
Personal Websites
Micky Byrne received a new heart in 1999 - read his story at www.mickybyrne.com
Double lung transplant recipient, Vic Rawlins, tells his story at: mylungtransplant.pwp.blueyonder.co.uk
Live Life Then Give Life - Emily Thackray, waiting for a transplant - Raising awareness of the shortage of organs available for transplant.
Andy Cooke tells his story here: www.transplantandy.pwp.blueyonder.co.uk
Report a broken link here
Give the gift of life. Join the NHS Organ Donor Register. Organ Donor Line 0845 60 60 400 http://www.uktransplant.org.uk/register
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.