Dear [insert relevant government representative],
We are writing to ask you to take urgent action to address challenges faced by people living with Wilson’s disease in [insert country].
If Wilson’s disease is diagnosed early and treated effectively, a person living with the condition can live a long and healthy life. In reality, systemic barriers and unacceptable gaps in care prevent many people living with Wilson’s disease from accessing the care they need.
As 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.
We are calling for [insert policy asks as appropriate – this may include one or more of the below examples]:
- Health system leaders to raise awareness of Wilson’s disease among key groups of healthcare professionals to increase the speed of diagnosis
- Policymakers to address inequalities in access to best-practice care for people living with Wilson’s disease
- Policymakers to incorporate Wilson’s disease into national rare disease strategies to address challenges experienced by people living with the condition
- Health system leaders to support better data collection on Wilson’s disease
- Health system leaders to address treatment non-adherence, especially among high-risk groups.
Now is the time to drive change for people living with Wilson’s disease to improve health outcomes and quality of life.
This letter has been endorsed by people and organisations with a united interest in improving the lives of people living with Wilson’s disease.
On behalf of the Wilson’s disease community in [insert country], we urge you to take steps towards addressing the barriers in accessing best-practice care faced by people living with Wilson’s disease. These steps include [insert county-specific actions].
Yours sincerely,
The Wilson’s disease community in [country]
This letter has been co-signed by the following:
[Insert name and organisation (if applicable)]
[Insert name and organisation (if applicable)]
[Insert name and organisation (if applicable)]
[Insert name and organisation (if applicable)]
