COORDINATING CARE: Learning from the experiences of people living with rare conditions
We are delighted that members of the Alström Syndrome UK community were involved in the ‘COORDINATING CARE: Learning from the experiences of people living with rare conditions‘ report which has been published by Genetic Alliance UK on Rare Disease Day, to highlight the importance of care coordination and the impact it has when this isn’t provided.
“We would like to thank Genetic Alliance UK for highlighting the Alström Syndrome highly specialised service as a model of good practice. Alström syndrome is an extremely rare and complex condition and we are grateful to have two centres of excellence in Birmingham. We value the partnership we have with clinicians as this enables us all to provide holistic care and support to all those affected by the condition in the UK. We know how fortunate we are, but we are very aware that more work needs to be done so that all people affected by rare conditions have access to equitable care and support.”
Kerry Leeson-Beevers, Chief Executive of Alström Syndrome UK and Breaking Down Barriers.
England Rare Diseases Action Plan
The Department of Health and Social Care also launched their next Rare Disease Action Plan to tackle health inequalities to ensure those living with rare conditions receive better care and treatment, fairer access to testing and have continued support.
“It has been a privilege to continue working with the England Rare Disease’s Framework Delivery Group as a patient representative.
I have been impressed with the effort the DHSC has made to engage with the rare disease community at different stages throughout the development of England’s second action plan. The DHSC and Breaking Down Barriers (BDB) have continued to work together to ensure the voices of people from diverse and marginalised communities who are also affected by rare conditions are included in these discussions and it was a pleasure to chair the BDB focus group.
While there is clearly more work to be done, I welcome the progress that has been made and the new proposed actions.
I look forward to working with the delivery group in the year ahead to monitor these actions and to identify areas for further development as we work towards ensuring that all people affected by rare conditions have equitable access to appropriate care and support.”
Kerry Leeson-Beevers, Chief Executive of Alström Syndrome UK and Breaking Down Barriers.
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