Update on Rare Disease Day
To mark Rare Disease Day, Rare Disease UK (RDUK) held three events across the UK. The first event on Tuesday 24 February 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.”
Our second parliamentary reception was held in Westminster the following day 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.
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 on Tuesday 3 March 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 also marked Rare Disease Day and World Birth Defects Day on Tuesday 3 March through a joint conference. Find out more here.
Read the full update on Rare Disease Day here.