About 18 years ago our daughter Bethan was diagnosed with NS. At that time we had great difficulty finding anybody who appeared to be able to offer support and advice from within any type of support group.
Despite searching the internet, information was scarce often contradictory and aimed mainly at adults with NS.
Some months after Bethan was diagnosed and we became more knowledgeable we realised that maybe things were not as bad as we had thought and because we both originally came from Health Service background we decided that when Bethan started to become more stable we would attempt to start a Local Support Group.
About 18 months later the time had come to start things moving. We set up our first web-site and intended to start a local group. We soon realised that because NS was relatively rare that a local group was not really feasible. It became regional then national then international. We now have contact with hundreds of families from all over the world.
One of our first contacts abroad was a family in Australia. We are now lucky enough to be able to count them as close friends and in 2003 we were able to go to Australia and meet them and we spent a fantastic 4 weeks with them visiting Melbourne, Sydney, Uluru Alice Springs, Adelaide and so many other places. CONTACT Most of our contact with families is via email however with the cost of phone calls dropping we are getting more and more telephone calls. We are now in a position to phone back UK landlines for no cost also most European landlines free and the USA and AUSTRALIA. This is making it possible for us to speak to so many more people from all over the world. It has also made it possible for us to speak to many more health care professionals to see what other units are doing with their children.
We have close links with various renal centres throughout the world and speak regularly to consultants who specialise in Renal medicine and who have a particular interest in NS.
WHAT CAN WE DO FOR YOU
- FIND OUT
WHEN TO CONTACT US (Please see contact page)
Whenever you need help. We are almost always available to speak on the phone. Our emails are checked at least twice every day. If you do not get a response it is usually because there has been a problem with the email getting to us or AOL users blocking incoming mail. anti-Spam filters drop us into the Spam box so if you are expecting a reply but have not had it - please check we are not sitting in a junk e-mail box.