PATIENT ORGANIZATIONS

Community Education & Resource Hub

Finding community and support is important for individuals affected by rare diseases. It can combat isolation, provide camaraderie, and empower individuals to advocate for their health. Connecting with others who understand the unique challenges of a rare disease can even improve overall health outcomes.

Explore some of the notable patient organizations that provide resources for patients, families, and caregivers impacted by these rare diseases.

Jump to: Narcolepsy Organizations | Sleep/Wake Organizations | Rare Epilepsy Organizations | Rare Disease Organizations

Narcolepsy Organizations

Narcolepsy is a rare, chronic, debilitating neurological disorder of sleep-wake state instability. Narcolepsy impacts approximately 170,000 Americans and is primarily characterized by excessive daytime sleepiness, cataplexy, and other manifestations of REM sleep dysregulation, which intrude into wakefulness.

This disorder affects men and women equally, with typical symptom onset in adolescence or young adulthood; however, it can take up to a decade to be properly diagnosed. Narcolepsy can cause significant burden on patients and their families, affecting their ability to perform routine tasks, limiting achievement at school and work, impacting social relationships, and causing impairment in overall quality of life.

Narcolepsy Network

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Know Narcolepsy^®

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Wake Up Narcolepsy

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Sleep/Wake Organizations

Sleep disorders like idiopathic hypersomnia (IH) and narcolepsy, as well as excessive daytime sleepiness symptoms associated with rare neurological disorders such as Prader-Willi syndrome (PWS) and myotonic dystrophy type 1 (DM1), can disrupt daily functions. In fact, sleep loss and deprivation can cause issues with memory, attention, mood regulation, complex thought, motor responses to stimuli, and performance at work or school. Sleep loss may also disrupt thermoregulation and increase the risk of various physical and mental disorders.

Project Sleep

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National Sleep Foundation

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Hypersomnia Foundation

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Sleep Consortium

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Prader-Willi Syndrome Association USA

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Foundation for Prader-Willi Research

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Lennox-Gastaut Syndrome Organizations

Lennox-Gastaut syndrome (LGS) is a rare and severe form of epilepsy, characterized by treatment-resistant seizures and developmental delays. It typically begins in early childhood between the ages of 3 and 5 years old. About 80%-90% of children with LGS will experience seizures into adolescence and adulthood. LGS accounts for 3%-4% of all children with epilepsy, and there are about 48,000 people in the US with LGS.

Lennox-Gastaut Syndrome Foundation

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Dravet Syndrome Organizations

Dravet syndrome (DS) is a rare and severe form of epilepsy that begins in childhood and can cause developmental, cognitive, and neurological impairments. DS typically begins in the first year of life, and accounts for approximately 3%-8% of all children who experience seizures in their first year of life. It is estimated that DS affects approximately 1 in 15,700 live births.

Dravet Syndrome Foundation

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Rare Disease Organizations

In the US, a disease is considered rare if it affects fewer than 200,000 people. While individually rare, rare diseases collectively impact a large number of people, with estimates suggesting more than 30 million Americans live with a rare disease, or about 1 in 10 people.

Many rare diseases have limited treatment options, and there is often little research being conducted on them. About 95% of rare diseases do not yet have approved treatments.