In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare disease community to identify common themes which will then feed into an overarching framework to follow the UK Strategy on Rare Diseases, which runs until the end of 2020.
To start the conversation, the Department of Health and Social Care have developed surveys to collect views from the patient community, healthcare professionals, researchers and industry, to understand the major barriers the rare disease community are facing. These surveys were developed with the help of stakeholders and will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases.
In the survey, you will be asked about your background as a member of the rare disease community (e.g. the nature of your condition or your work on rare diseases) and what you think are the greatest challenges faced by those living with, caring for, or developing treatments for rare diseases.
Survey responses will be used exclusively for the national conversation on rare diseases and related policy work by the rare disease policy teams across the UK Government departments. It will not be shared with any third parties. Responses will be anonymous unless you choose to share your personal details such as your name and email address.
Follow this link to find out more and take the survey – the deadline for responses is Friday 29 November.
Please note that everyone filling out the survey will use the same link. You will be asked which group you belong to as part of the survey.