We have been working on some website changes to enable families to communicate with each other and discuss topics which will help each other in a safe way on the internet. We will be able to let you know soon how you can log in and belong.

There will also be the ability to have more ‘specific’ forums that might deal with or be more project related. An example of this could be the development of a lobbying paper for medication, discussion papers etc. These are likely to be ‘ISSUES’ driven, and will change more regularly and may not necessarily be used by the wider audience.

The public forums are likely to cover such topics as:

• fitting into school
• feeding issues
• confirming diagnosis
• access to paediatrics services
• clinical care
• carers support

The private area conversations are likely to include such issues as:

• bowel management
• menstrual management

Success measures

I think it will be helpful for us as we prepare for our next conference in twelve to eighteen months time.

• the quality of the discussion and output and not the quantity
• management of the information loop from discussion board to website
• newness – people finding each other
• subject matter – lot of new info that people are sharing eg bone condition treatment. Eg ‘does this mean we can find out if a younger child has it before…'
• spontaneous feedback from users – that it’s shortened the journey for people needing information with to rare disorders.