Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases.
There are over 300 million people worldwide living with rare diseases. How is that relevant to SDA? Narcolepsy, Idiopathic Hypersomnia, Kleine Levin Syndrome and Non-24-Hour Sleep/Wake Disorder are all sleep disorders that are considered rare diseases. There are also many people who are affected by disrupted sleep including chronic insomnia and/or other sleep disorders who have rare diseases. Many primary carers for people with rare diseases are also affected by disrupted sleep or are struggling to manage sleep disorders who reach out to us for support.
People with Narcolepsy, Idiopathic Hypersomnia (IH), Kleine Levin Syndrome (KLS) and Non-24-Hour Sleep/Wake Disorder can go undiagnosed (or are misdiagnosed) for years. There is no cure for these diseases and the treatment available in Australia is limited and does not target the cause. In fact, so little is understood about IH and KLS they do not know what causes these diseases.
Rare Disease Day is important as it improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Rare Disease Day not only gives Sleep Disorders Australia the opportunity to raise awareness of rare sleep disorders. The disrupted sleep, poor sleep health, and other sleep disorders that many people with rare diseases and their carers experience result in overall poor physical and mental health so it is important to us that we also raise awareness of the impact that can have on all people in the rare disease community.
"Rare diseases are rare, but rare disease patients are numerous" - Orphanet