The history of Autism Awareness Month dates back more than 50 years to April 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 work […]
Each year on March 26th, epilepsy advocates in more than 80 countries celebrate Purple Day. Starting as an annual event in 2008, participants are asked to wear purple to bring awareness to this group of chronic neurological disorders characterized by repeated seizures. Currently, only Canada recognizes Purple Day as an official holiday, but epilepsy ambassadors
Each February, the rare disease community celebrates Rare Disease Month. Started in 2008 by the European Organization for Rare Diseases (EURORDIS), the event brings together rare disease patients, caregivers, and advocacy organizations across the globe to advance awareness and increase research opportunities. The Rare Disease Month celebration culminates in Rare Disease Day, held annually on the “rarest day” of the year.
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.
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
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
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,
A recent study by the National Institute of Health’s National Center for Advancing Translational Sciences (NCATS) found the costs associated with rare disease patient care are between three to five times higher than the costs to treat those with more common illnesses. In the United States, a rare disease affects less than 1 in 200,000
In our January edition of Raising Awareness for Rare, we explore cervical cancer, glaucoma, and thyroid diseases and their rare disease subgroups. January starts a month-long initiative to raise awareness and promote advocacy efforts for each of these diseases. Learn more about the rare subgroups of these historically common illnesses and how each condition impacts
Patients facing a rare disease diagnosis often find that participation in a clinical trial is the only course of treatment available to them. Selecting the right clinical trial payment option to reimburse patients for their participation is critical to improving access, enrollment, and retention in rare disease clinical trials.