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'Rare Disease Conversation' launched by UK Department of Health

21 October 2019
Appeared in BioNews 1020

The Department of Health and Social Care have launched a survey to determine the obstacles to improving care for people living with rare disease. 

The survey responses will be used to shape the rare disease framework that will succeed the UK Strategy for Rare Diseases which runs until the end of 2020.

'We want to hear from as many people as possible' said the Minister for rare diseases, Baroness Nicola Blackwood. 

'Whether you’re a patient, family member or carer, industry or clinical specialist, GP, nurse, or other clinician, I want as many of you in the rare disease community to tell us through this survey about the biggest challenges you face, and have your voices heard.' 

The survey forms part of a 'national conversation' on rare disease, announced by Baroness Blackwood in June, which aims to gather a range of views to identify common themes and understand the major challenges faced by the rare disease community.

Rare diseases are those that affect fewer than one in 2,000 people, but as there are many different rare diseases, around 1 in 17 people in the UK will be affected during their lives. Around 80 percent of rare diseases are wholly or partly genetic in origin. 

The survey is seeking responses from three key stakeholder groups: patients, their families and carers; healthcare providers, researchers and clinical staff; and members of industry developing rare diseases treatments.

Participants may answer the survey more than once if they are impacted by rare disease in multiple ways, e.g. answering once from a patient perspective, and separately as a carer or in a professional capacity. Respondents are not required to share personal details to participate.

The announcement was welcomed by Genetic Alliance UK Chief Executive Jayne Spink: 

'With the end of the UK Strategy drawing near, the commencement of work to inform a rare disease framework is extremely welcome. This is an early and important opportunity to make sure the views and experiences of people affected by rare diseases are heard at the start of the process.' 

The survey can be found here and should take 10-20 minutes to complete. The deadline for responses is Friday 29 November.

Minister for rare diseases, Nicola Blackwood: Time to talk
Genetic Alliance UK |  17 October 2019
National Conversation on Rare Diseases
Department of Health and Social Care |  15 October 2019
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