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 that are primary carers for people with rare diseases 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.
“With research, possibilities are limitless” - Rare Disease Day
"Rare diseases are rare, but rare disease patients are numerous" -