patient experience

Amyotrophic Lateral Sclerosis ALS Awareness Month

Amyotrophic Lateral Sclerosis (ALS) Awareness Month 2022

In 1992, then-President George H.W. Bush designated the month of May as National Amyotrophic Lateral Sclerosis (ALS) Awareness Month with the signing of Proclamation 6426. In the years since, ALS patients, healthcare providers, and advocacy groups have used May of each year to bring attention to this rare disease that attacks the central nervous system. …

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Autism Acceptance Month 2022 Shift from Autism Awareness to Acceptance

Autism Acceptance Month 2022: A Shift from Autism Awareness to Acceptance

The history of Autism Awareness Month dates back more than 50 years to April of 1970, when the Autism Society of America (ASA) first observed this month-long celebration. In 2021, the organization changed the name of the observance to Autism Acceptance Month to focus on accepting all individuals with this disorder. “While we will always …

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Purple Day 2022 Awareness Rare Epilepsy

Purple Day 2022: Raising Awareness for Rare Epilepsies

Since 2008, epilepsy advocates in more than 80 countries have celebrated Purple Day, bringing to light a group of chronic neurological disorders characterized by repeated seizures. On March 26th annually, participants are asked to wear purple and participate in epilepsy awareness events. Only Canada currently recognizes Purple Day as an official holiday, but epilepsy ambassadors …

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One-on-One Support: Improving Patient and Caregiver Experiences in Clinical Trials

One-on-One Support: Improving Patient and Caregiver Experiences in Clinical Trials

Emotions of fear and uncertainty often flood an individual when they first receive a rare disease diagnosis. Many patients will require assistance with daily tasks and transportation and logistics involved in various doctor’s appointments, treatment methods, and at times, participation in a clinical trial. Patients reach out to family and friends who act as caregivers, …

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