Hirschsprung’s disease does not end with surgery, and it does not end in childhood.
It is a lifelong diagnosis that deserves lifelong understanding.
Hirschsprung’s Disease UK supports families at every stage while working to change how Hirschsprung’s disease is recognised and understood across the UK. You do not have to face it alone.
About Hirschsprungs Disease UK
Hirschsprung's Disease UK started when Georgina's little boy Ffredi was diagnosed with Hirschsprung's disease. In 2024, she spent hours researching Hirschsprung's Disease and found it difficult to find cohesive information. In January 2025, she launched HDUK, an information site about Hirschsprung's.
In February 2026, alongside those with Lived Experiences sitting on our Trustee Board, Hirschsprung's Disease UK registered as a charity, so that when you find this place, you'll know you aren't alone.
We exist to:
-
Improve understanding of Hirschsprung’s disease
-
Support families emotionally and practically
-
Amplify lived experience
-
Promote research and evidence
-
Advocate for better long-term awareness and support
What is Hirschsprung's Disease?
Hirschsprung’s disease is a rare bowel condition affecting around 1 in 5,000 babies.
It occurs when nerve cells are missing from part of the bowel, affecting how the bowel functions. It causes poo to become stuck in the bowels.
Experiences vary. Almost all children require surgery. Some children will have rectal washouts or a stoma. Others experience long-term bowel challenges.
Every individual’s journey is different.
How we support
Information & Education
Accessible explanations, guidance for families, awareness for professionals.
Support & Connection
Peer connection, online support sessions, stories from others and practical resources.
Awareness
Hirschsprung's Disease UK works to raise awareness of Hirschsprung's Disease, educate professionals, start national conversations and explore research and evidence to improve understanding and outcomes.
Get Involved
Whether you are a parent, an individual living with Hirschsprung’s disease, a healthcare professional, or a supporter, there is a place for you here.
You can help by sharing your story, taking part in research, volunteering, fundraising, or helping us raise awareness. Together, we can improve understanding and support across the UK.
Lived Experience Led
We are led by people who understand Hirschsprung’s disease not just in theory, but in daily life. Our Trustees all have experience of Hirschsprung's Disease and everyone involved in HDUK is a volunteer.
Our work is informed by real families, real challenges, and real experiences. This ensures that everything we do is grounded, relevant, and responsive.
Thank you for joining Hirschsprung’s Disease UK. We’ll keep you updated with news, support opportunities and ways to be involved in improving awareness and understanding across the UK.