Summary :
Rare Disease Day has inspired a pioneering video to support patients living with rare conditions
Alexion Pharma UK has launched a new video titled–‘Reforming Rare Diseases: Making the Rare Path the Right One’ for Rare Disease Day 2022. The video reiterates the urgent need to reduce the element of chance around rare disease diagnosis and care.
The campaign aims to highlight the reforms that are desperately needed to improve patient care for the rare disease community. While 3.5 million people in the UK are affected by a rare condition, there are still significant unmet needs in the standard of care for these patients.
The video was created in consultation with Genetic Alliance UK, Beacon, Medics 4 Rare Diseases and Rare Revolution. The findings are based on a recent patient and caregiver survey on the standard of care for rare disease patients in the UK.
In the survey, over one-third (37%) of people living with a rare condition rated their overall experience of care as very poor, 41% waited more than five years for an accurate diagnosis and 71% manage their own care plans.
Rare Disease Day is a global awareness initiative which takes place on the last day of February each year. It was launched by EURORDIS – Rare Disease Europe – and its Council of National Alliances in 2008, to raise awareness about the impact of rare diseases on patients.
“Rare conditions are often severe, chronic and progressive and can have a devastating impact on both individuals and their families,” said Lauren Roberts, joint interim CEO and director of engagement and support, Genetic Alliance UK.
“We urgently need to address the unmet needs of this population and resolve the issues that those living with a rare condition experience across the entire patient pathway. By raising awareness of these challenges, we hope to continue to find ways to improve the standard of care for this community.”
It is more evident than ever that faster diagnosis and better coordination of treatment, are paramount in ensuring better patient outcomes for those with rare diseases