Uncommon Illness Day has impressed a pioneering video to help sufferers residing with uncommon circumstances
Alexion Pharma UK has launched a brand new video titled–‘Reforming Uncommon Ailments: Making the Uncommon Path the Proper One’ for Uncommon Illness Day 2022. The video reiterates the pressing want to scale back the aspect of probability round uncommon illness prognosis and care.
The marketing campaign goals to spotlight the reforms which can be desperately wanted to enhance affected person look after the uncommon illness neighborhood. Whereas 3.5 million folks within the UK are affected by a uncommon situation, there are nonetheless vital unmet wants in the usual of look after these sufferers.
The video was created in session with Genetic Alliance UK, Beacon, Medics 4 Uncommon Ailments and Uncommon Revolution. The findings are based mostly on a current affected person and caregiver survey on the usual of look after uncommon illness sufferers within the UK.
Within the survey, over one-third (37%) of individuals residing with a uncommon situation rated their total expertise of care as very poor, 41% waited greater than 5 years for an correct prognosis and 71% handle their very own care plans.
Uncommon Illness Day is a worldwide consciousness initiative which takes place on the final day of February annually. It was launched by EURORDIS–Uncommon Illness Europe–and its Council of Nationwide Alliances in 2008, to boost consciousness in regards to the affect of uncommon ailments on sufferers.
“Uncommon circumstances are sometimes extreme, power and progressive and might have a devastating affect on each people and their households,” mentioned Lauren Roberts, joint interim CEO and director of engagement and help, Genetic Alliance UK.
“We urgently want to handle the unmet wants of this inhabitants and resolve the problems that these residing with a uncommon situation expertise throughout your entire affected person pathway. By elevating consciousness of those challenges, we hope to proceed to seek out methods to enhance the usual of look after this neighborhood.”
It’s extra evident than ever that quicker prognosis and higher coordination of remedy, are
paramount in guaranteeing higher affected person outcomes for these with uncommon ailments.
The video is obtainable to obtainright here.