Skip to main navigation Skip to main content
The University of Southampton
Wessex Imprinting Group

Transient Neonatal Diabetes Study Day 19th March 2011

Published: 19 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.

Our TND Study Day

The aim of the meeting was for families and scientists to explore what is known about TND; the biological causes, best treatments and to share experiences. This was the first chance for a dialogue between those who have the disorder with those working to understand why it happens and how best treat it.

The University of Southampton transient neonatal diabetes research team, who discovered the genetic causes of the condition, have only diagnosed 151 cases of TND in the world in the last 20 years. Given the rarity of the condition, it was excellent that six families from around the UK (plus one intrepid person from Holland) attended and scientists from 4 UK centres, as well as the organising team.

Each family had a very different story; from one that had experienced the treatment that stemmed from a lack of understanding 50 years ago, to the youngest attendee who had not yet gone into remission and was being treated with insulin during the day.

This study day was an opportunity for these families to express their concerns with doctors and to help direct future research to make it relevant.

The feedback from the families and researchers that attended the study is what has helped us to develop this webiste with the University of Southampton.

To hear more about the outcome of the study day and comments from the families and health professionals that attended see our Newsletter about the day.

Quotes from some of the families and researchers that attended the study day:

“The day was valuable, we had been given a lot of the information but to have it all presented in one day was very useful. I think when you are in the hospital environment it’s difficult to take everything in and obviously in that slightly more informal educational environment it’s a bit easier to piece it all together.”

“ I think it would be useful to do more days like this in the future on conditions that are more unusual or rare like TND. I think that one thing that came out from talking to the patients and families at the day, was that there isn’t a great deal of support and advice”….

“It was really nice to meet other parents, it was very nice to see other patients that had had TND and had now grown up, it alleviated some of our fears, you know, about how our child would turn out.”

“Being able to ask questions and get an immediate response, where normally the responses take a long time to come back”

“There was the opportunity to ask questions, also with paper work where we would write our questions. Everything was answered for every parent, I felt.”

“The most valuable thing was to find out what research was being done and where it’s going and it was nice to meet everybody else but the key thing for me was to find out what’s being done and where it’s leading to.”

“I think it was very useful as well, I certainly learnt a lot, I’m not from a medical background so I learnt a lot about the condition and from the patient’s perspective as well.”

Useful Downloads

Privacy Settings