Dear [insert title] [insert surname],
I am writing to invite you to meet with me to discuss the challenges faced by people living with Wilson’s disease and the urgent need to address them.
Wilson’s disease – a rare disease that affects the body’s ability to metabolise copper – can have a devastating impact on those living with it.
If the disease is diagnosed early and treated effectively, a person living with the condition can live a long and healthy life. In reality, unacceptable gaps in care and systemic barriers prevent many people living with Wilson’s disease from accessing the care they need.
Because Wilson’s disease is rare, awareness among healthcare professionals can be low. This contributes to unnecessary delays in diagnosis, with misdiagnosis being a common problem. In addition, health systems often do not recognise, or are unable to coordinate, the full range of care and support services that a person living with Wilson’s disease may need to ensure they are treated, monitored and supported in a long-term, holistic way.
With rare diseases firmly on the political agenda, now is the time to for us to advocate for the needs of people living with rare diseases, such as Wilson’s disease, and those of their families.
I would appreciate it if you could spare some time to discuss these issues further, and consider how we may work together to address them.
Best wishes,
[Insert name and organisation if applicable]
