Many children who are born with or develop a life threatening or life-limiting condition may not actually ever receive a full diagnosis of what their condition is or it may take considerable time to for a diagnosis to happen. This is sometimes abbreviated to SWAN (syndromes without a name) and can be incredibly isolating and frustrating for families.
Even if a child has no diagnosis they can still avail of the numerous services that are offered in the Republic of Ireland and Northern Ireland. A detailed list of services offering direct care, support and advice can be accessed here: Links to Services
An international organisation offering help and support in this area is SWAN UK. Whilst it is not operating in the Republic of Ireland it does have a presence in Northern Ireland and its website is free for anyone to use. SWAN UK is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.
The support group was formed in 1999 by the grandmother of a child with severe developmental delays, but no diagnosis for her condition. Over the following decade SWAN provided support and information to numerous families and saw its membership rise to 1300 members. Close links were formed with a number of health and social care professionals in the UK and with similar support groups abroad.
Link to website: Swan UK