Our Clinical Toolkit project is something that was developed in collaboration with our families, clinicians and other HCPs with an aim to help supporting doctors when they are making a diagnosis of Tay-Sachs and Sanhdhoff. The toolkit contains many resources that range for explaining the disease in a way that families can understand to how to provide care to families. Designed with Cognitant, the Toolkit uses their Healthinote platform which means it can be shared by clinicians directly to patients and their families.
The toolkit
The toolkit was launched in 2023 and has already had a big impact on the community. It has empowred families to gain a deeper understanding of the diseases so they have all then the tools they need when talking with their doctors.
The toolkit will ensure that families have access to all the information that they need to provide support.
Rationale
We know that families struggle to find informaiton on the disease after diagnosis.
Goals
We want to empower and educate families so that they have all the tools they need.
Next steps
The toolkit is continuously reviewed and content will be added when required.
