One in three people with cystic fibrosis on the waiting list for a lung transplant will die before they can receive one.
Watch Ashley's moving story to understand the life-saving importance of organ donation, and see why we're fighting to ensure that everyone who needs a transplant can have one.
What we're campaigning for
We're continuing to raise awareness of issues around transplantation and encourage families to have conversations about being an organ donor.
The UK still has one of the highest rates of family refusal to organ donation in the Western world, meaning that many families continue to refuse that a loved one's organs are donated even if their loved one has signed up to the organ donor register. We are encouraging people to talk to their loved ones about organ donation so that their wishes can be known.
Hope for More: campaigning for a national lung allocation system
Hope for More campaign update: 6 June 2017
Following our campaign for a fairer donor organ allocation system, on 6 June 2017 NHS Blood & Transplant announced it will move from the current regional allocation of donor organs to a fairer national system for the most urgent cases.
How does the new system work?
The new system allocates donor organs to recipients on the transplant list based on who needs them the most, rather than allocating them to the individual who is closest to the hospital the organ is received at.
There are three tiers of allocation for donor organs:
The new system is used for those on the super-urgent and urgent tiers. For patients in the non-urgent tier, lungs will still be allocated on a regional basis.
How we campaigned to make it happen
In 2014 we published a report containing 12 recommendations for increasing the number of successful transplants for people with cystic fibrosis, and improving the quality of care they receive throughout.
One of the key themes to emerge from the report was the need for a fair national system for the allocation of donor lungs.
Our Hope for More report bought together over 140 CF and transplant healthcare professionals as well as people with the condition, both pre- and post-transplant. It set out 12 recommendations, including a national allocation system, to improve the prospects of people with cystic fibrosis.
These 12 actions include:
- Introducing a national lung allocation system.
- Increasing the pool of available donor lungs by recognising extended criteria organs.
- Giving patients the information needed to make informed decisions about accepting such organs.
- Delivering a model of care that empowers the patient population.
More information about transplants
We've worked with people with cystic fibrosis (CF), their families and CF and transplant clinicians to create resources for people considering or undergoing transplant and their families.
Research we fund
We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
What is CF?
Cystic fibrosis, or CF, affects the lungs, digestive system and other organs. There are around 11,000 people living with it in the UK.
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