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The University of Southampton
Wessex Imprinting Group
Supporting patients and families

Why we have developed this website.

This website has been designed by the Wessex Imprinting Group as a direct result from feedback from patients with an imprinting disorder and their families.

Families with young children have reported that they felt that the lack of support and advice available from other health professionals (due to the lack of understanding and information on imprinting conditions available) meant that they felt isolated and unsupported. This has also lead to families feeling emotions such as guilt and responsibility relating to the inheritance of the conditon.

What are we doing to address these issues?

Feedback from our patients and their families is what we need to help us improve our service delivery and make living with these conditions easier.

It is with this sort of feedback that we we have been able to develop this website with the University of Southampton to help address these issues.

In this section of the website you will find information about transient neonatal diabetes and other imprinting disorders, what these conditions mean for the patient and their families and how our research aims to help answer unanswered questions.

How can you help us?

We would really appreciate any feedback on how we can improve the information and support available on this website. If you have any questions or suggestions on how we can improve please contact us via the contact us tab.

Information on Transient Neonatal Diabetes

This section aims to help patients and families with transient neonatal diabetes (TND) understand the condition, what happens during testing and how they can help us learn more to improve the lives of people with TND.

Other Imprinting Disorders

This section aims to provide information to patients and their families with other imprinting disorders such as Silver-Russell syndrome, Beckwith Wiedemann syndrome, Prader-Willi syndrome, Angelman syndrome and many more. You will also find information on current research and how you can help us to learn more about these rare conditions.

“If you google the condition, it doesn’t seem too much that comes up…… it’s very hard to find any information. I think that’s one of the frustrating things especially as a new parent, it’s difficult to find out about it.” “When my daughter was diagnosed with diabetes, I wanted 18 times more information and you’re just desperate for somebody to tell you and so a big fat website with people’s stories on and lots of advice, I think would be a lovely thing even though there are very few people who need it, when you need it, you really need it. It’s a kind of pastoral obligation almost.”

Transient Neonatal Diabetes Study Day 19th March 2011

The first ever study day on Transient Neonatal Diabetes (TND) for families and health professionals took place on Saturday 19th March 2011 in London supported by the Wellcome Trust.

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