Welcome to our brand new topic, brought to you with the involvement of our friends at SWAN UK.
A bit of background: SWAN UK was one of the charities nominated by MNers to benefit from our 2015 Giving Week, and the response from MNers and SWAN UK’s members was really impressive - which left us thinking that there was probably something we could do in the long term to help provide a platform for parents in this position to chat to each other and get support. So here it is!
If you're arriving here from the SWAN UK website - welcome, help yourself to a cup of 
, and feel free to have a browse through our FAQs, how-to videos and our guide to getting started. The Mumsnet Special Needs (MNSN) crew are an incredibly knowledgeable and supportive lot and we hope you get the answers, support and help you're looking for. Please note that we at MNHQ are not experts - we believe strongly in the power of peer-to-peer support and the wisdom of the crowd - but we do have some rules and guidelines for posting. Do please report any posts that you think we ought to look at - or just get in touch ([email protected]) if you've got any questions or comments for us.
People from SWAN UK will check in on threads started in this topic occasionally and may chip in with help, advice or links where they think they would be useful.
Why is this topic called 'undiagnosed genetic conditions?'
As lots of you will know, there are many diagnosable genetic conditions that may result in additional needs: Down syndrome, muscular dystrophy, cystic fibrosis, motor neurone disease and Angelman syndrome, to name just a few. Of course these conditions can cause real distress and difficulty for those affected by them - we know that many users of the Special Needs board will be in this position and get support and advice from their fellow MNers.
SWAN stands for ‘syndromes without a name’. It is not a genetic diagnosis, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause. Syndromes without a name are also referred to as undiagnosed genetic conditions, unknown genetic conditions or undiagnosed genetic disorders. Some children and young adults affected by a syndrome without a name might be described as having global developmental delay or failure to thrive. They might have learning disabilities and/or physical disabilities. They can sometimes have complex medical needs and epilepsy. Some children may not have any learning disabilities but be physically disabled whilst others are physically fine but have learning disabilities.
SWAN UK exists to offer specific support to those whose conditions are very real, but cannot be diagnosed. Along with the physical and medical needs that come with these conditions, these families are also in the emotionally very difficult position of being unable to put a name to their child's condition. They may also (as a result) find it more difficult to tap in to a body of peer knowledge and support.
So our hope with this topic is that it will provide a place for these families to find one another and help each other out - as well as tapping in to the wider support and advice available within MNSN.
We hope this will be a useful topic - as ever, we're here to hear your opinions and thoughts, so do let us know.