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Last Updated: Tuesday, 21 September, 2004, 17:53 GMT 18:53 UK
Advice and information

The following organisations may be able to give advice or information on the subject of extremely premature babies.


One in ten babies is born premature or sick - that's 70,000 babies every year.

Around 18,000 of these babies need intensive care and the figure is rising - more and more babies are born prematurely or have a low birthweight.

BLISS was established 25 years ago by a group of concerned parents and has since developed into the leading national charity working in this field.


Mencap is currently undertaking a feasibility study, commissioned by the Department for Education and Skills, into establishing a National Centre for Early Intervention, which would be a potential source of help for families of premature babies.

A crucial part of the study is to gain the views of as many parents and professionals as possible about such a Centre. If you would like to take part in the study then click on the link below.

The feasibility study is looking at the viability of a Centre that could act as a one-stop shop for information, advice, research and training related to early intervention for babies and pre-fives with a disability.

24 Weeks Plus

24 Weeks Plus is a charity set up by three Mothers who have all experienced a premature birth at 24 weeks.

The Charity offers an e-mail based information service for parents where they can readily find out information on the care of premature babies and offers ways to help parents adapt in the best way they can to a Neonatal unit environment.

This service will also outline the ways in which a parent can help and bond with their newborn whilst in a Neonatal Unit.

They can be contacted by emailing them at:

Wellchild Trust

WellChild, the new name for Children Nationwide, is committed to caring for and supporting all sick children, whatever their illness, through research, treatment, prevention and cure, and providing information and advice for all those who care for them.

The charity was founded in 1977 and is concerned with all childhood illness and health issues.

It works across the whole paediatric arena to seek new ways to minimise the stress and trauma of treatment and to ensure children grow into healthy adults.

Their helpline number is: 0845 1228636


The EPICure study was established in 1995 to determine the outcome of survival and rates of disability of extremely premature babies in the UK.

The study collected extensive data on the births of all babies who were born up to 25 weeks and 6 days between March and December of that year.

So far the study has produced two reports, one focusing from birth to the age of one year, and the other on the progress of the children at the age of two and a half.

Action Medical Research

Touching Tiny Lives is the new campaign from leading charity Action Medical Research, highlighting the urgent need for more research to help vulnerable babies and particularly premature babies.

The Charity is aiming to raise 3million over the next three years to help find answers to premature birth, pre-eclampsia and other serious conditions which threaten babies and expectant mothers.

The campaign aims to find the causes of premature birth and other problems and to stop pregnancy complications like pre-eclampsia, which can often lead to problems for both mothers and babies.

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