The month of November is Alzheimer’s Awareness Month and National Family Caregivers Month (NFCM). Alzheimer’s disease is a progressive and often debilitating form of dementia, and patients need an increased level of care as the disease progresses. Those who provide care for patients with Alzheimer’s disease often require their own support system, as the physical and emotional stress can be difficult to process alone.
During November, we embrace the cultural diversity of Native Americans while also recognizing the historical controversy and challenges they face. This total of almost 10 million people accounts for 2.9% of the entire United States population. Many Native communities, often residing on reservation lands, face steadily increasing obstacles such as limited resources, increased poverty, diminished access to healthcare services, and certain rare conditions.
Through the month of November, “No-Shave” participants let their hair grow as a way to start conversations and raise money for cancer research. Participants pledge to donate the cost of hair grooming for the month – from several dollars for razors to hundreds for a hair salon visit – to fund cancer research and increase cancer awareness.
Of the over 7,000 known rare diseases, only 5% currently have any form of treatment. With such staggering statistics, the need for increased awareness, education, and treatment options is imperative. This month we’ll be taking a deeper look at four rare diseases: Dysautonomia, Gaucher Disease, Niemann-Pick Disease, and Rett Syndrome.
Members of ethnic communities around the globe suffer from rare diseases unique to their demographic group. Designing a trial and selecting participants with diverse backgrounds that proportionally represent each demographic group is one of the first steps a sponsor can take to create a diverse and inclusive clinical trial.
A rare disease diagnosis poses more questions than answers for parents learning that their child has a severe and often untreatable condition. According to the National Organization for Rare Disorders (NORD), there are over 7,000 known rare diseases, with 90% of these having no effective treatment. Obtaining a diagnosis is only the first step and …
September is Newborn Screening Awareness Month Newborn Screening is a modern medical practice many believe to be the most successful public health program in United States history. Since the 1960s, every infant born in America receives a heel prick within the first 48 hours of life. The resulting dried blood is then tested for a …
Newborn Screening Awareness Month: Creating a Federalized Screening Program Read More »
Prioritizing Patient Safety, Recruitment, and Retention Almost two years after its initial outbreak, COVID-19 continues to cause numerous problems for sites, sponsors, and patients enrolled in clinical trials. New disease variants are creating an increase in cases, resulting in additional barriers to clinical trial participation. For patients in the rare disease space, these issues further …
COVID-19 Solutions: Prioritizing Safety, Recruitment, and Retention Read More »
LGBTQ Pride Month 2021 Every June, Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ) communities across the globe celebrate Pride Month, honoring those who participated in the Stonewall Riots in June of 1969. These demonstrations took place over a week and resulted from a violent police raid on the Stonewall Inn in Greenwich Village, New York, …
Members of ethnic communities around the globe suffer from rare diseases unique to their demographic group. Their genetic makeup makes them more susceptible to hereditary issues which affect generation after generation. Designing a trial and selecting participants with diverse backgrounds that proportionally represent each demographic group is one of the first steps a sponsor can …
Improving Patient Diversity, Access and Awareness in Rare Disease Clinical Trials Read More »
View the results of our recent research to explore how effective patient support strategies can reduce barriers, increase retention, and improve outcomes in rare disease clinical trials in our latest eBook.
