Last year Genomics England commissioned Genetic Alliance UK to seek the views of patients and famili…
Behçet’s in a Day is an educational event and the first of its kind in Wales to bring together patients and health professionals to find out more about this rare condition, it's management and treatment options.
Genetic Alliance UK supported one of the Welsh trustees of the Behçet’s Syndrome Society to organise the event which took place earlier this month and attracted over 90 delegates including secondary care health professionals, commissioners and patients and families. Specialists from the three Centres of Excellence in England presented at the event on areas including treatment of Behçet’s, oral care in Behçet’s, and Behçet’s and the eye. It also provided an opportunity to highlight issues that patients with Behçet’s have been experiencing in trying to gain access to a specialist centre in England.
Rachael Humphreys, who is a patient and trustee of the Behçet’s Syndrome Society, spoke at the event and gave her perspective of living with the condition. She will be driving forward her campaign to ensure that patients in Wales receive equitable access to the Centres of Excellence in England and that the Welsh Government continue to make progress with implementing the commitments within the Welsh Implementation Plan for Rare Diseases.
Please contact, Emma, our Development Officer in Wales for more information about support in organising events to raise awareness of your condition locally.