Right to rescue: extra help for children
Children with rare diseases may need extra help to develop their self-esteem and self-respect. These children might be seen as different because of their rare disease. They may not have a diagnosis or it may take a long time to get a diagnosis. They can have greater physical needs. They may have trouble with social settings. All these things can impact their mental health. They need more support from services and peer support groups. Recognising their experience is an important first step and creating pathways that focus on quality of life, self respect, social integration and access to more support need to be identified, developed and promoted.