Rare Neurological Disease Special Report

Read the issue by clicking on the cover image or HERE

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This 2021 issue is our seventh annual Rare Neurological Disease Special Report. It comes at a time when the global pandemic is still very much a part of our everyday lives. While the COVID-19 crisis is the polar opposite of a rare disease, it may offer some insights into the rare disease community. Collectively, we faced a disease no one knew much about—an untreatable condition that sent us into isolation, changed our world view, and altered our daily lives in ways we never imagined. We experienced, many of us for the first time, the fear and helplessness of a medical situation that was potentially fatal. Isn’t that what patients with rare diseases and their families face every day? Fear of the unknown; the desperate search for answers; isolation from a world and, all too often, a medical community that does not understand your situation; the terror of suspecting that time may not be on your side, and the valiant effort to press on despite desperate odds—these are things the rare disease community know all too well.

In publishing the Rare Neurological Disease Special Report, our goal has always been to educate the medical community on conditions they may rarely see and offer some hope to those who battle a rare neurological disease. I hope you enjoy reading our seventh annual issue.

Read the issue by clicking on the cover image or HERE

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This 2021 issue is our seventh annual Rare Neurological Disease Special Report. It comes at a time when the global pandemic is still very much a part of our everyday lives. While the COVID-19 crisis is the polar opposite of a rare disease, it may offer some insights into the rare disease community. Collectively, we faced a disease no one knew much about—an untreatable condition that sent us into isolation, changed our world view, and altered our daily lives in ways we never imagined. We experienced, many of us for the first time, the fear and helplessness of a medical situation that was potentially fatal. Isn’t that what patients with rare diseases and their families face every day? Fear of the unknown; the desperate search for answers; isolation from a world and, all too often, a medical community that does not understand your situation; the terror of suspecting that time may not be on your side, and the valiant effort to press on despite desperate odds—these are things the rare disease community know all too well.

In publishing the Rare Neurological Disease Special Report, our goal has always been to educate the medical community on conditions they may rarely see and offer some hope to those who battle a rare neurological disease. I hope you enjoy reading our seventh annual issue.

Read the issue by clicking on the cover image or HERE

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This 2021 issue is our seventh annual Rare Neurological Disease Special Report. It comes at a time when the global pandemic is still very much a part of our everyday lives. While the COVID-19 crisis is the polar opposite of a rare disease, it may offer some insights into the rare disease community. Collectively, we faced a disease no one knew much about—an untreatable condition that sent us into isolation, changed our world view, and altered our daily lives in ways we never imagined. We experienced, many of us for the first time, the fear and helplessness of a medical situation that was potentially fatal. Isn’t that what patients with rare diseases and their families face every day? Fear of the unknown; the desperate search for answers; isolation from a world and, all too often, a medical community that does not understand your situation; the terror of suspecting that time may not be on your side, and the valiant effort to press on despite desperate odds—these are things the rare disease community know all too well.

In publishing the Rare Neurological Disease Special Report, our goal has always been to educate the medical community on conditions they may rarely see and offer some hope to those who battle a rare neurological disease. I hope you enjoy reading our seventh annual issue.