In 2015, Rare Disease Day was themed around ‘living with a rare disease – day-by-day, hand-in-hand’, and emphasises the challenges in the daily lives of patients, families and caregivers who are living with a rare disease. It was also an opportunity to highlight the importance of implementing the UK Strategy for Rare Diseases, which promises a better framework for research into medical treatment and high quality services for all patients across the UK. To mark Rare Disease Day, Rare Disease UK (RDUK) held three events across the UK.
The first event was held in the Scottish Parliament and hosted by Malcolm Chisholm MSP. Keynote speaker Shona Robison, Cabinet Secretary for Health Wellbeing and Sport, noted that Scotland was at the ‘forefront of implementing the UK Strategy for Rare Diseases’. Ms Robinson recognised that ‘quick and timely diagnosis is important and allows patients and their families to access necessary treatment’ and that the Scottish Government was committed to improve this.
Our second parliamentary reception was held at Westminster and was attended by over 150 people including 35 MPs and Peers. For the third time Liz Kendall MP, Shadow Minister for Care and Older People, hosted the event. Ms Kendall confirmed that Labour is “absolutely committed to continuing, developing and implementing the UK Strategy for Rare Diseases.
Earl Howe, the minister in charge of rare diseases, described the event as “one of the landmark events of his year” and emphasised his commitment to making the UK a world leader in patient-centred research into rare diseases.
Our final speaker for the Westminster reception was Fiona Marley, Head of Specialised Services at NHS England. Fiona outlined a number of initiatives through which the NHS plans to improve rare disease diagnosis and patient care.
The reception in Westminster also saw the launch of two short films, put together by Health Education England, one aimed at patients and their families and another aimed at healthcare professionals. You can watch them here.
Our third and final reception took place at the Welsh Assembly and was hosted by Darren Millar AM. The Deputy Minister for Health, Vaughan Gething AM, launched the Welsh Rare Disease Plan which sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live and whatever their circumstances.
The plan details what actions health boards, NHS trusts and their partners in local government, the third sector, education and research and industry can take together to engage and co-ordinate specialised services, which may operate only at regional, national or even international level. Read the plan here.
The Northern Ireland Rare Disease Partnership marked Rare Disease Day and World Birth Defects Day through a joint conference. Find out more here.
For more on these events, you can take a look at our Storify.