Understanding Rare
Chromosome and Gene Disorders
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National Conversation on Rare Disease: Make Sure Your Voice is Heard

The existing UK rare disease strategy finishes at the end of 2020.  The government intends to produce a “rare disease framework” to follow on from this strategy to improve the lives of people living with rare diseases and disorders. It is very important that as many Unique members as possible give their views on what should be included in that framework.

In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. To start this ‘conversation’, a survey has been launched to understand the major barriers that families challenged by rare diseases and disorders, and involved healthcare professionals, face. Please take the opportunity to complete the survey using the link below by Friday 29th November 2019 and make sure your voice is heard.

The survey link is: https://dhsc-mail.co.uk/form/Sx1iaZDJ/12fe439d08333dcf0e23be36/