Hirschsprung's Disease UK Support
We are currently developing a range of support for those affected by Hirschsprung's Disease. HDUK is run by volunteers.
I Can't Wait/Enterocolitis Aware Cards
We are currently created Hirschsprung's Disease I Can't Wait Cards. These cards are FREE and will be posted FREE to UK address. This is thanks to HDUK trustees who are covering the cost of these.
Booking form will be available soon
Expression of Interest
We are currently gathering information from the Hirschsprung’s community to better understand what support is most needed across the UK. By sharing your experience and preferences, you are helping us shape future peer groups, resources and services. While completing the form does not guarantee immediate support, it ensures that our work is guided by real needs and lived experience.
Support Groups
We are currently in the process of developing this support route
Need a chat?
We are currently in the process of developing this support route
In-Person Meet Ups
We are currently in the process of developing this support route
If you're interested in keeping updated with the support offered by Hirschsprung's Disease UK, you can share your details here and we'll be in touch with updates about our work, research and support initiatives.
You can unsubscribe at any time.
We’ll keep you updated with news, support opportunities and ways to be involved in improving awareness and understanding across the UK.
Find More Support
This section contains a range of external resources where you can get more support, learn more information about Hirschsprung's disease.
Tom's Hirschsprung's Podcast
Tom's podcast provides a look into the remarkable experiences of some of the most inspiring people around Hirschsprung's disease.
There are almost 200 episodes. Tom is a trustee of HDUK.
Hirschsprung's Disease family support UK - Facebook Group
A Facebook group for families in the UK.
@gutsy.mum
Rachel has Hirschsprung's disease and a stoma, she is mum to two boys who also have Hirschsprung's disease. She is also one of the hosts of Pelican Healthcare's podcast 'Beyond the Pouch' and shares her experience on Instagram. Rachel is a volunteer for HDUK.
@livewithgeorgina
Georgina is mum to Ffredi, a 19 month old with Hirschsprung's disease. She shares her experience on Instagram. Georgina is the founder of HDUK.
Beyond the Pouch
Beyond the Pouch, the podcast that takes you on a captivating journey into the world of ostomy. Get ready to dive into open and honest conversations as we explore the inspiring lives of ostomates and uncover the incredible stories and experiences beyond the pouch.
Contact
Contact is a charity for families with disabled children. They have a page explaining Hirschsprung's disease.
Hirschsprung’s Community Planning Discord
A community to organise social events, Tom and Elle have created a new Hirschsprung’s Community Planning Discord server.
https://discord.gg/pXJn5ZjX
A Bear Named Buttony
A Bear Named Buttony supports children and young people who have a stoma. For children, we gift a bear with a stoma, a book and for young adults, a wash bag full of non-medical items to help adjust to life with a stoma. We aim to raise positive awareness of living with a stoma.
Guts UK is the national charity for the digestive system.
Ileostomy and Internal Pouch Association (IA) is a registered charity supporting people living with an ileostomy or internal pouch.
Colostomy UK is a UK-based charity dedicated to providing support and guidance.
Bowel Research UK is a national medical research charity dedicated to funding new treatments and potential cures for bowel cancer, inflammatory bowel disease and other bowel disorders. The charity’s goal is to save lives while also enabling people living with chronic bowel conditions to enjoy a much better quality of life.
Samuel’s Smile is a charity for children who are diagnosed with rare diseases. We have now been running for seven years and we have managed to provide SMILES for over 85 families across the United Kingdom.
Hirschsprungs Family Connections in Southhampton
A small charity set up to connect families who love a child with Hirschsprungs Disease (HD). We are based out of Southampton and work closely with Southampton Children's Hospital where all the children are treated.