Hirschsprung’s Disease UK has officially become a registered charity, creating a dedicated organisation to provide information, support and resources for people affected by the rare bowel condition across the UK.

Hirschsprung’s disease is a rare condition affecting the bowel, caused by the absence of nerve cells in part of the intestine. It is usually diagnosed in babies and children and requires specialist treatment and surgery, although the impact of the condition can continue throughout childhood and into adult life.

Hirschsprung’s Disease UK (HDUK) was established following recognition of a significant gap in dedicated UK information and support for people affected by the condition and their families.

The organisation has now been formally registered as a charity in England and Wales and plans to expand its work across four key areas: resources for patients and families, peer support, education and awareness, and engagement with healthcare professionals and services.

Georgina Merckel Evans, founder and volunteer operational lead of Hirschsprung’s Disease UK, said:

“Becoming a registered charity is an important step for HDUK and gives us the foundations to develop the support and resources that people affected by Hirschsprung’s disease have told us they need.

“We’ve heard from families across the UK about the challenges they face – not only around diagnosis and treatment, but finding reliable information, connecting with others who understand the condition and navigating life with Hirschsprung’s disease.

“Our aim is to work alongside the HD community and healthcare professionals to develop practical support that responds to those needs.”

HDUK is currently developing new patient and family resources, developing a Clinical Advisory Group and our plans for peer support networks.

As a small new charity, HDUK is also inviting people who would like to support its work to get involved through volunteering and fundraising.

Further information about Hirschsprung’s Disease UK, will available at our new website launching in a few weeks at www.hirschsprungsdisease.co.uk.

About Hirschsprung’s Disease UK

Hirschsprung’s Disease UK is a registered charity in England and Wales supporting people affected by Hirschsprung’s disease, including patients, parents, families and carers.

Its work focuses on resources, peer support, education and awareness, and healthcare engagement.

Registered Charity Number: 1219498

Media enquiries

Georgina Merckel Evans

Founder: Hirschsprung’s Disease UK

info@hirschsprungsdisease.co.uk

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