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A digital rendering of a human brain with highlighted neural pathways and electric activity, visualizing brain function.
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Pavel Burko, Ilias Miltiadis, Mahsa Alavi

Amyotrophic lateral sclerosis (ALS) is characterized by the degeneration of both upper and lower motor neurons, which ultimately leads to muscle weakness, atrophy, spasticity and contractures.1 ALS typically manifests in the 50–60 years age range, although familial cases may present in late adolescence or early adulthood.2 The time from the first symptom to diagnosis is approximately 10–16 […]

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD)
Web Address: NORD Website

National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983.

Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most.

Together with over 330 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases.

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