This is an Early Support information resource on children with a rare condition and covers what a rare condition is, getting a diagnosis and information for your child and working with practitioners involved in your child’s care.
Also discussed is working with education practitioners, health, local and specialised services and what is being done to support people with rare conditions, including experimental treatments, treatment abroad and alternative therapies and medicines.
If you are looking for who can help, tips and strategies for children with a rare condition and where you can get further information and support, it is also available in this resource.