No childhood lost to serious illness
Great Ormond Street Hospital Charity Strategy 2026–2031
No childhood lost to serious illness
We want to see fewer children dying from rare and complex conditions in the earliest years of life.
Reggie, 21 months, and his sister Nyla, 7, love keeping active.
They’re being treated at GOSH for cystic fibrosis
Why this matters
There has never been a more urgent moment for seriously ill children.
Across the UK, around one in three children with a rare disease die before their fifth birthday. Yet children are dramatically underrepresented in health research. While young people make up 20% of the UK population, only around 5% of research funding is spent on them.
Incredible, lifesaving science exists. Breakthroughs are possible. But too often they don't move fast enough to reach children who can’t afford to wait.
It’s not good enough.
Behind these numbers are real children whose childhoods are interrupted – or stolen – by serious illness. Alongside them are families navigating unimaginable complexity while trying to hold their world together.
For many of these children, especially those with the rarest and most complex conditions, Great Ormond Street Hospital (GOSH) is a beacon of hope. Its staff are its greatest strength, providing exceptional care for patients and helping families through some of their hardest moments. But they are operating in one of the most challenging periods in the hospital’s history. Across the NHS, demand is rising, resources are tight and specialist care is under pressure.
Mya, 11, pictured with nurse Kianna, loves Jellycat toys. She’s being treated for a brain tumour at GOSH
Mya, 11, pictured with nurse Kianna, loves Jellycat toys. She’s being treated for a brain tumour at GOSH
More seriously ill children are living for longer. That’s progress. But it also means more children and young people, from birth to 18, need complex care and support.
Against this backdrop, very few organisations can drive meaningful change for seriously ill children and young people.
Great Ormond Street Hospital Charity (GOSH Charity) can.
As the UK’s largest dedicated charitable funder of child health research, and as the charity rooted at the heart of GOSH, we have a unique opportunity and a clear responsibility to act.
This strategy sets out how we’ll stop at nothing to ensure seriously ill children are given what they deserve: the best chance and the best childhood possible.
We exist to help make GOSH even more extraordinary, and to make sure every patient and family has the support they need. But our impact doesn’t stop at the hospital doors. We have big ambitions for seriously ill children everywhere.
We want more children to reach their fifth birthday – and beyond.
Esha, 10, is recovering from leukaemia and loves strawberry picking and crafts
Esha, 10, is recovering from leukaemia and loves strawberry picking and crafts
Over the life of this strategy, we'll double our investment in child health research so children can access the treatments they need, faster. We’ll use our influence and voice to advocate for change within the health system. And we’ll continue to fund the vital practical and emotional support families at GOSH rely on.
And we won’t stop.
Together with our supporters and partners, and our colleagues at GOSH, we’ll keep researching, influencing, advocating, playing, laughing, holding and caring – for the next five years and beyond.
Until no childhood is lost to serious illness.
Louise Parkes
Chief Executive
Great Ormond Street Hospital Charity
Filoda, 1, is pictured on Chameleon Ward, which cares for children having specialist neonatal and paediatric surgery
Filoda, 1, is pictured on Chameleon Ward, which cares for children having specialist neonatal and paediatric surgery
Our big, bold ambition
Our purpose is bold: to ensure no childhood is lost to serious illness.
And our ambition is generational. It’s about changing the odds for all seriously ill children.
We want to see fewer children dying from rare and complex conditions in the earliest years of life.
That means more children accessing breakthrough treatments sooner and more young people reaching adulthood having had the best childhood possible along the way.
We won’t realise our ambitions overnight. It will take sustained effort over the next decade and beyond.
But the next five years are critical. They’ll set our direction, build momentum and accelerate progress towards lasting change.
By 2031, we expect to see a clear shift – not only in research breakthroughs and new treatments, but in the experiences of GOSH patients, families and staff.
Meet Hope
A child we’ll call Hope is born in 2026. She’s tiny. Perfect. She has no idea what the word “rare” means.
Within weeks, her parents sense something is wrong. Tests follow. Referrals. Waiting. More waiting.
Eventually, a diagnosis: a rare, life-limiting condition.
At GOSH, Hope is in the best possible place. But what happens next – the treatments that are available, how quickly they reach her, the support her parents receive – depends on the world around her.
And Hope isn’t alone. Over 3.5 million people in the UK live with a rare condition, and 75% of these start in childhood.
By the time Hope and other children like her reach five, 10 and eventually grow up, we want the system around them to look and feel different because of the choices we make now.
Meet Hope
A child we’ll call Hope is born in 2026. She’s tiny. Perfect. She has no idea what the word “rare” means.
Within weeks, her parents sense something is wrong. Tests follow. Referrals. Waiting. More waiting.
Eventually, a diagnosis: a rare, life-limiting condition.
At GOSH, Hope is in the best possible place. But what happens next – the treatments that are available, how quickly they reach her, the support her parents receive – depends on the world around her.
And Hope isn’t alone. Over 3.5 million people in the UK live with a rare condition, and 75% of these start in childhood.
By the time Hope and other children like her reach five, 10 and eventually grow up, we want the system around them to look and feel different because of the choices we make now.
Best chance and
best childhood
We believe that every seriously ill child deserves the best chance and the best childhood possible. And that more children should live to see their fifth birthday. Our strategy is built around making that happen.
Best chance
and best childhood
We believe that every seriously ill child deserves the best chance and the best childhood possible. And that more children should live to see their fifth birthday. Our strategy is built around making that happen.
Best chance
To give children the best chance, we’ll fund the breakthroughs that save lives and speed up the science that gives families hope.
We'll back bold ideas and high-potential research, so more treatments move from bench to bedside faster. We’ll invest in rare and complex conditions that others overlook, funding according to need, not numbers. And we’ll champion care that’s made for kids.
Kids like Arlo, pictured, who was diagnosed with a severe immune deficiency when he was four months old. After pioneering gene therapy treatment at GOSH, he’s now a happy six-year-old who loves riding his bike and pranking his brother.
Best chance
To give children the best chance, we’ll fund the breakthroughs that save lives and speed up the science that gives families hope.
We'll back bold ideas and high-potential research, so more treatments move from bench to bedside faster. We’ll invest in rare and complex conditions that others overlook, funding according to need, not numbers. And we’ll champion care that’s made for kids.
Kids like Arlo, pictured, who was diagnosed with a severe immune deficiency when he was four months old. After pioneering gene therapy treatment at GOSH, he’s now a happy six-year-old who loves riding his bike and pranking his brother.
Best childhood
Survival alone isn’t enough. To give children the best childhood, we’ll make sure every GOSH family has what they need from the moment they walk through the hospital’s doors – from practical help like meal vouchers and home-from-home accommodation, to a listening ear and the space to take a breath.
We’ll help make GOSH even more extraordinary, supporting play that helps children through treatment, providing moments of comfort and connection and investing in building hospital spaces that feel more like home.
We’ll do this for kids like Nyla, pictured, who is treated at GOSH for cystic fibrosis, along with her brother, Reggie. While she’s in hospital, Nyla loves doing crafts with the GOSH Arts team and drama class with the Play team.
Best childhood
Survival alone isn’t enough. To give children the best childhood, we’ll make sure every GOSH family has what they need from the moment they walk through the hospital’s doors – from practical help like meal vouchers and home-from-home accommodation, to a listening ear and the space to take a breath.
We’ll help make GOSH even more extraordinary, supporting play that helps children through treatment, providing moments of comfort and connection and investing in building hospital spaces that feel more like home.
We’ll do this for kids like Nyla, pictured, who is treated at GOSH for cystic fibrosis, along with her brother, Reggie. While she’s in hospital, Nyla loves doing crafts with the GOSH Arts team and drama class with the Play team.
The Big Six
What we'll change for children like Hope
The Big Six
What we'll change for children like Hope
1. Supercharging science for seriously ill children
For families at GOSH and others like them, research is often a critical source of hope, leading to faster diagnoses and new treatment options. No child should have to wait years for answers.
We’ll fund research to find better treatments and cures for rare and life-limiting diseases, including clinical trials.
By 2031: we will have supported at least 15 more clinical trials, a 50% increase on the previous five years, and will have helped GOSH to open new trials more quickly.
2. Care that puts kids first
Too often, advances in clinical care are designed for adults and adapted later for children – if they make it into children’s care at all.
We’ll champion new and better ways to diagnose, treat and care for children, including smarter use of technology, like supporting doctors to spend more time with patients by using an AI assistant to draft clinic notes, or pioneering less invasive surgeries so kids can get back to being kids.
By 2031: we will have helped develop new approaches that will not only benefit patients at GOSH, but will be rolled out across other hospitals or routinely funded by the NHS.
Jennah, 7, loved making slime while being treated for a brain tumour at GOSH, and rang her end of treatment bell in 2025
3. Championing research for children who need it most
Children with serious illnesses wait far longer than adults for new treatments. In some cases, medicines don’t reach children until two decades after they’re approved for adults. For children with rare conditions, the barriers are even greater – only 5% of rare diseases have a treatment that can slow, stop or improve the illness itself.
In the last 10 years, just under 70 rare or life-limiting conditions have seen a new treatment approved for use in children in the UK.
We’ll use our voice, partnerships and funding to help change the system, so every seriously ill child, including those with the rarest and most complex conditions, can benefit from research.
By 2031: we will have achieved a decade’s worth of progress in half the time, so an additional 70 rare and life-limiting conditions will have an approved treatment for children in the UK.
“I chose to take part in research at GOSH as I felt that, even if it didn’t work for me, it could help others. Years later, we know it worked and I’m doing really well.
"My goal is to become a research scientist and be part of the next big discovery to help people like me."
Alyssa, now aged 17, the first person in the world to receive a base-edited cell therapy
“I chose to take part in research at GOSH as I felt that, even if it didn’t work for me, it could help others. Years later, we know it worked and I’m doing really well.
"My goal is to become a research scientist and be part of the next big discovery to help people like me."
Alyssa, now aged 17, the first person in the world to receive a base-edited cell therapy
4. Supporting every GOSH family from day one
Families often arrive at GOSH in crisis. Many don't know where to go, what’s available or how to access help. We already work hard to wrap support around families so they can be there for their children. But we know there’s more to do to reach every family who needs us, and to make sure our support is fair and easy to get.
By 2031: at least 80% of families who need us will have been offered one or more of our support services during their time at GOSH.
5. Helping kids be kids
When serious illness hits, childhood suffers. We’ll continue to fund the services children need to feel like kids, even in the hardest moments. From getting messy with the Play team to afternoon drop-in sessions for teens, we’ll help patients feel connected and express themselves.
In 2024/25, 100% of families who took part in a Play session said it helped their child to be themselves. But there’s more we can do. We’ll ask children and young people what they need to feel like themselves in hospital, so we can offer support in ways that work for them.
By 2031: at least 80% of children and young people who tell us they’d like support have opportunities to feel more like themselves, grow in confidence or feel connected during their time at GOSH.
Aditi, 8, pictured with a dancer from the charity funded GOSH Arts team, was the first child in the UK to receive a new type of kidney transplant
6. Creating spaces to rest, learn, play and recover
Children need to be cared for in environments designed just for them. We’ll invest in spaces, like the Children’s Cancer Centre, that provide patients of all ages with the chance to rest, play, learn and recover – and feel at home. From teen zones to quiet areas for parents, we’ll prioritise comfort, dignity and a sense of connection, helping to make hospital a bit more fun and a bit less hard at every age and stage.
By 2031: at least 80% of children and families will agree the spaces we fund made their time at GOSH easier, more comfortable and more like home.
Picture: an artist’s impression of the school in the new Children’s Cancer Centre
“The accommodation has been amazing. If we didn’t have it, I don’t know what I’d do.”
Fahima, mum to Zarwa, 7, treated at GOSH for a heart condition
“The accommodation has been amazing. If we didn’t have it, I don’t know what I’d do.”
Fahima, mum to Zarwa, 7, treated at GOSH for a heart condition
Our building blocks
To deliver this strategy, we need strong foundations. We’ll bring our values – curiosity, courage and care – into everything we do. We also have three building blocks. These are the internal strengths that make everything else possible.
Funding for
the future
To help change the future for seriously ill children, we need funding that’s bold, resilient and built to last. We’ll finish raising the £300 million needed for the Children’s Cancer Centre. We’ll look for new ways to raise money and grow our income, and our fundraising will reach and sustain a net income of at least £100 million a year by the end of five years.
Driven by
data
To make the right decisions, we need the right insights. We’ll strengthen how we use data so teams can improve our donor experience, understand impact, ask the right questions and be confident in their choices.
Creating connections
To have an impact, our people need to continue to feel connected – to each other, to the hospital and to the children and families we’re here for.
We’ll strengthen our connections so colleagues can work even better together and focus on what matters most.
Our building blocks
To deliver this strategy, we need strong foundations. We’ll bring our values – curiosity, courage and care – into everything we do. We also have three building blocks. These are the internal strengths that make everything else possible.
Funding for
the future
To help change the future for seriously ill children, we need funding that’s bold, resilient and built to last. We’ll finish raising the £300 million needed for the Children’s Cancer Centre. We’ll look for new ways to raise money and grow our income, and our fundraising will reach and sustain a net income of at least £100 million a year by the end of five years.
Driven by
data
To make the right decisions, we need the right insights. We’ll strengthen how we use data so teams can improve our donor experience, understand impact, ask the right questions and be confident in their choices.
Creating connections
To have an impact, our people need to continue to feel connected – to each other, to the hospital and to the children and families we’re here for.
We’ll strengthen our connections so colleagues can work even better together and focus on what matters most.
Ezra, 8, enjoyed seeing the Play team while being treated for bone marrow failure at GOSH
Ezra, 8, enjoyed seeing the Play team while being treated for bone marrow failure at GOSH
Hope's
childhood beyond this strategy
When Hope was born, she had access to world-class care at GOSH. But her future was shaped by the limits of the system around her.
If we succeed in our goals, by the time she grows up, her story will reflect something different: a system that moves faster, reaches further and does more for seriously ill children.
By her first birthday
Hope's diagnosis will come faster and more accurately. Her family will have the support they need right when they need it.
By her fifth birthday
Hope will have access to a precision medicine trial designed just for children. She’ll benefit from facilities like the advanced imaging suites and hospital school in the newly opened Children’s Cancer Centre.
By her tenth birthday
New treatments will reach children right away, not years after they’re proven to work, because we will have influenced changes to national policy. Hospital will give the comfort and feeling of home, with even better spaces for play and connection.
By her eighteenth birthday
Fewer children will die from a rare disease. Hope, and many young people like her, will enter adulthood having experienced a childhood where they still got the chance to be kids.
This is the future we’re
determined to help build.
For the children from all over the UK who are treated by GOSH every day. For children with rare and complex conditions everywhere. For this generation and all those to come.
Because no childhood should be lost to serious illness.
Hope's
childhood beyond this strategy
When Hope was born, she had access to world-class care at GOSH. But her future was shaped by the limits of the system around her.
If we succeed in our goals, by the time she grows up, her story will reflect something different: a system that moves faster, reaches further and does more for seriously ill children.
By her first birthday
Hope's diagnosis will come faster and more accurately. Her family will have the support they need right when they need it.
By her fifth birthday
Hope will have access to a precision medicine trial designed just for children. She’ll benefit from facilities like the advanced imaging suites and hospital school in the newly opened Children’s Cancer Centre.
By her tenth birthday
New treatments will reach children right away, not years after they’re proven to work, because we will have influenced changes to national policy. Hospital will give the comfort and feeling of home, with even better spaces for play and connection.
By her eighteenth birthday
Fewer children will die from a rare disease. Hope, and many young people like her, will enter adulthood having experienced a childhood where they still got the chance to be kids.
This is the future we’re determined to help build.
For the children from all over the UK who are treated by GOSH every day. For children with rare and complex conditions everywhere. For this generation and all those to come.
Because no childhood should be lost to serious illness.
Frank, 3
Frank, 3, loves the film Cars and is being treated for a brain tumour at GOSH
A big, huge, massive
thank you
We’re proud of our ambitions for seriously ill children. But we didn’t decide on this strategy alone.
A huge thank you to all the GOSH patients, families and staff who gave us their time and feedback during the development of this strategy, and to all the GOSH Charity staff, supporters, donors and partners with us on this journey. We couldn’t do it without you.
Great Ormond Street Hospital Children's Charity. A company limited by guarantee (company number 09338724) and a registered charity (charity number 1160024). Registered office: 40 Bernard Street, London WC1N 1LE.