Respect the right to a name, a nationality and family ties.
Governments must respect a child’s right to their identity with their name, their nationality and their family relationships. In the medical world, a ‘code’ is used to name a disease. The International Classification of Diseases (ICD) codes are often used in hospitals to name diseases.
In Australia, there are codes for less than 5% of rare diseases. This means that most rare diseases do not have a name. Codes are needed to get funds. If your disease has no code, this makes it difficult to get funding for medical care. Better coding for rare disease will help improve care for people living with rare disease.