Quality statements
Statement 1 People referred to a consultant-led service because of concerns about a rare disease undergo diagnostic investigations and have first definitive treatment or a decision on non-treatment in line with national maximum waiting times for non-urgent consultant-led treatment.
Statement 2 People with a suspected rare disease that remains undiagnosed after diagnostic investigations are recognised as a distinct patient group by healthcare services and are on a care pathway that can support future diagnosis.
Statement 3 People undergoing diagnosis for a rare disease, with a newly diagnosed rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations are provided with clear and accurate information to aid self-management.
Statement 4 People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations are supported to make shared decisions throughout all stages of care.
Statement 5 People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have a named healthcare professional who coordinates their care.
Statement 6 People diagnosed with a rare disease or with a suspected rare disease that remains undiagnosed after diagnostic investigations have physical, psychological and emotional support needs assessed at key points of the care pathway.
Statement 7 People with a rare disease have equitable access to treatments when recommended by each nation's health and care guidance body.
Statement 8 People with a rare disease are offered the opportunity to take part in clinical research, if available and they are eligible.