Until 2024, the Norameda Special Care Medicine Department has been actively working with two main rare diseases: Alpha-mannosidosis and Hereditary Leber optic Neuropathy. This year, Norameda introduced a new option in treating Fabry disease and is entering a new field – Narcolepsy.
“It’s a disease of young people. Unfortunately, it is still rarely diagnosed in Lithuania: although there are around 600 sufferers, only 30 are currently receiving treatment. Our main goal at this stage is to improve access to diagnosis as next-generation medicines will be available from the 1st of March,” says Sandra Ivanauskienė, the founder and leader of Norameda’s Special Care Medicine Department.
The field of Narcolepsy Norameda is entering in partnership with French pharmaceutical company Bioprojet Pharma, presenting a new generation medicine for treating Narcolepsy. It is a first-of-its-kind medication that increases histamine levels in the brain.
Histamine is a natural chemical in the brain that works in two ways to help us stay awake during the day: it increases brain activity in areas that help you wake up and decreases brain activity in areas that help you sleep.
The new medicine from Bioprojet is the first and only once-daily tablet medication that is FDA-approved to treat excessive daytime sleepiness or cataplexy in adults with Narcolepsy.
Norameda takes over the representation rights of this new medicine on the 1st of March.
“And more, we have a fourth patient diagnosed with Alpha-mannosidosis. Compared to other countries, this is an excellent result. I am pleased that we will soon be able to start treatment,” says S. Ivanauskienė.
In addition, Norameda’s Special Care Medicine Department is working with the medical team to ensure that the state reimburses the next-generation drug to treat Fabry disease. A positive outcome is expected shortly.
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There are Type 1 and Type 2 of Narcolepsy.
Narcolepsy type 1 is a rare neurologic disease characterized by excessive daytime sleepiness associated with uncontrollable sleep urges and cataplexy (sudden loss of muscle tone while awake, often triggered by pleasant emotions).
Narcolepsy type 2 is characterized by excessive daytime sleepiness associated with uncontrollable sleep urges, sometimes sleep paralysis, and hypnagogic/hypnopompic hallucinations.
The age of onset varies between 10 and 30 years old, and symptoms are lifelong. The average time between the age of appearance of the signs and the diagnosis is still very long, ten years.