Celebrated since 1983, Alzheimer’s & Brain Awareness Month is observed each June to raise awareness of the most common form of dementia. Dementia is an umbrella term for a group of medical conditions characterized by brain impairments that affect one’s daily life. These conditions include Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, frontotemporal, vascular, normal pressure […]
June is Alzheimer’s & Brain Awareness Month Read More »
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.
Amyotrophic Lateral Sclerosis (ALS) Awareness Month 2022 Read More »
Are you new to the healthcare industry and want to learn more about clinical trials? Or are you curious about the specifics of patient care during clinical trials? Clinical trials are often complex studies that span multiple years, with a wide variety of professionals taking an active role. This blog breaks down the critical stages
Understanding Clinical Trials: Frequently Asked Questions Read More »
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
Autism Acceptance Month 2022: A Shift from Autism Awareness to Acceptance Read More »
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
Purple Day 2022: Raising Awareness for Rare Epilepsies Read More »
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,
One-on-One Support: Improving Patient and Caregiver Experiences in Clinical Trials Read More »
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
Caring for Rare: The Elevated Cost of Rare Disease Patient Care Read More »
Founded by Dr. Carter G. Woodson in 1926 and officially recognized by President Gerald Ford in 1976, Black History Month is a time to honor the contributions and legacy of African Americans throughout U.S. history and raise awareness of the challenges they face. This year’s Black History Month theme is “Black Health and Wellness,” focusing
Black History Month: Shining a Light on Equity in Healthcare Read More »
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
Raising Awareness for Rare: January Read More »
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.
Clinical Trial Payments: Patient Insights in Rare Disease Trials Read More »
