Together, we can improve understanding and support across the UK.

Hirschsprung’s Disease UK is a lived experience-led organisation working to improve awareness, research and support for individuals and families affected by Hirschsprung’s disease. 


Support Our Work

Your donation helps us:

  • Provide free urgency toilet cards

  • Develop parent support packs

  • Fund UK-wide research

  • Raise national awareness

  • Support peer-led groups

Every contribution helps us build better understanding and stronger support for families.

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Whether it’s a sponsored run, a bake sale, a workplace fundraiser or a personal challenge, fundraising helps us grow our work and reach more families.

If Hirschsprung’s disease has touched your life, or you simply want to help, we would love to support your fundraising efforts.

You can email us to find out more or use the button below.

Contact us

You can support Hirschsprung’s Disease UK at no extra cost when you shop online. By using Easy Fundraising, retailers donate a small percentage of your purchase to us, without costing you anything. It’s a simple way to make everyday spending count.

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Share Your Story

Lived experience is at the heart of Hirschsprung’s Disease UK.

Sharing your story can:

  • Help another family feel less alone

  • Raise awareness of the realities of Hirschsprung’s disease

  • Inform better understanding across the UK

You can choose how much you share, and whether your story is anonymous.

If you would like to contribute your experience, we would love to hear from you.


Share your story via our form
Share your story via email

Volunteer with us

As we grow, we are building a community of volunteers to help shape the future of Hirschsprung’s Disease UK.

You might support us by:

  • Helping with our zoom peer support sessions

  • Hosting in-person events for families

  • Supporting fundraising initiatives

  • Offering professional skills in areas such as communications, design, research or governance

Trustees: We currently have a full board of trustees but we are always looking for those with experience in accounting to join our board. If you would be interested in becoming a trustee, you can contact us and we can let you know when we are looking for trustees. 

Medical Professionals: We are looking for medical professionals with expertise and an interest in Hirschsprung's disease to become patrons and advisors for Hirschsprung's Disease UK. You don't need a lot of time to be involved, but you can get stuck in with evaluating our Information Hub and other support. 
Contact us via email

Contact us

If you would like to get involved, discuss partnership opportunities, or ask a question, we would love to hear from you.

For general enquiries:
info@hirschsprungsdisease.co.uk

For press and media enquiries:
press@hirschsprungsdisease.co.uk

We aim to respond as soon as possible. Our team is run by volunteers

Emails Us
Media Enquiries