Understanding Rare
Chromosome and Gene Disorders
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Data Protection Bill: Amendment for Patient Organisations

Together¬†with our patron, Baroness Pauline Neville-Jones, we alerted the Government to the risk posed by new data protection laws (‘GDPR’), coming into force in May 2018, to the wealth of information patient organisations have in their databases.

Working with Genetic Alliance UK, we called for a change that would allow organisations like Unique to process their data for patient support and to raise awareness, outside the usual consent requirements. We are delighted that our proposed amendment to the Data Protection Bill has been adopted by the government.

To read more about what this means, click here.