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Addressing the biggest challenges for rare disease communities
Each year, Rare Disease Day takes place worldwide on the last day in February. The main objective of Rare Disease Day is to raise awareness amongst the general public, the healthcare industry and decision-makers about rare diseases and their impact on patients' lives.
Why is Rare Disease Day so important?
Estimates vary, but the number of rare diseases the medical community has identified might exceed 7,000! A rare disease is defined as affecting fewer than 1 in 2,000 people in Europe and fewer than 200,000 Americans at any given time.
It is common that primary care physicians either do not recognise specific symptoms or don’t make the link between common symptoms and a rare disease. As a result, the patient journey to an accurate diagnosis can be long and difficult. For people living with a rare disease, their quality of life is typically greatly affected by the chronic, progressive and frequently life-threatening nature of the disease.
Rare Disease Day raises awareness and encourages the healthcare industry and decision-makers to understand the needs of those living with rare diseases.
Treatment for rare diseases:
Whilst there is generally no cure for a rare disease, there have been huge advances in treatment options.
The goal for first generation treatments was survival, but second generation treatments are now helping patients live a more ‘normal’ life and enjoy a better quality of living. And just last year, we saw landmark breakthroughs in advanced genetic therapies, such as viral mediated gene transfer and CAR-T therapies.
Today, thankfully, infants with rare diseases can often live much longer and grow up to enjoy the milestones of life through childhood, adolescence and adulthood.
Clearly treatment can be life-saving and life-changing. However, the lack of awareness around rare diseases, and the diagnosis challenge, still remains. And, as patients live longer, this creates whole new challenges to make sure they receive the level of care they need.
For more information about specific challenges for the rare disease communities, please read our full blog here.
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