Rare Disease Day
Today is special in two ways. It is Rare Disease Day, but it’s also a rare day: Leap Day, which comes around just once every four years. This year, the key message of the day is: “Rare is many worldwide, rare is strong every day, and rare is proud everywhere.”
Why rare diseases?
Approximately 300 million people around the world live with a rare disease, of which there are over 6,000. Bloomfield is the only treatment facility in Ireland for people with Huntington’s disease, a rare disease that impacts an estimated 700 people here. A further 3,000 people are believed to be at risk from the disease across the country. 72% of rare diseases – including HD – are genetic. Rare Disease Day raises awareness around the world with the general public, policymakers, and healthcare professionals.
Rare Disease Day’s long-term goal is for people suffering from a rare disease to have equal access to healthcare, social opportunities, diagnosis, and treatment.
Huntington’s disease shares characteristics with many other rare diseases: it causes an array of symptoms, many of which are common to other conditions, and which may vary from person to person. Unless it is known that a family member suffers from the disease, these things can potentially delay diagnosis and treatment. Patient quality of life is impacted by the chronic, progressive, and degenerative aspects of the disease, and there is currently no cure. At Bloomfield, we will continue to work tirelessly to care for those affected by Hungtington’s disease, and to work toward a HD-free future.