Genetic Alliance UK are working with other charities like TreatSMA on a policy project to improve access to medicines for rare conditions.
Genetic Alliance UK are working on a policy project to improve access to medicines for rare diseases. This project is called Resetting the Model. To inform this project, they are launching a survey to find out the views of patients, carers, patient organisations and industry members on access to medicines for rare diseases.
The deadline of this survey is Friday 19th April
The survey is open now for the next two weeks and we strongly encourage all parents and carers to participate and share the survey. There is more information on the Genetic Alliance UK website plus a video that explains the aims of the project.
Please support Genetic Alliance UK in their work – click the link below to read more about the project and complete the survey.