rare disease

Understanding Clinical Trials: Frequently Asked Questions

Understanding Clinical Trials: Frequently Asked Questions

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 »

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 …

Purple Day 2022: Raising Awareness for Rare Epilepsies Read More »

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, …

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

Caring for Rare The Elevated Cost of Rare Disease Patient Care

Caring for Rare: The Elevated Cost of Rare Disease Patient Care

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 fact, in the United States, a rare disease affects less than 1 …

Caring for Rare: The Elevated Cost of Rare Disease Patient Care Read More »

Enhancing Patient Access and Retention in Rare Disease Clinical Trials

Enhancing Patient Access and Retention in Rare Disease Clinical Trials

Featured in an article in PM360, Scott Gray, CEO, discusses new developments in the rare disease clinical trial industry ahead of the upcoming Rare Disease Day on February 28, 2022. Learn more about alleviating financial barriers to trial participation, mitigating geographical barriers to trial participation, and the federal efforts to support rare disease trials in …

Enhancing Patient Access and Retention in Rare Disease Clinical Trials Read More »

Black history month improving equity in healthcare

Black History Month: Shining a Light on Equity in Healthcare

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 »

Rare Disease Month Overcoming Obstacles on the Road to Gold

Rare Disease Month: Overcoming Obstacles on the Road to Gold

Clincierge celebrates Rare Disease Month throughout February. Since 2008, rare disease patients, caregivers, and advocacy organizations have joined together to bring awareness to the almost 7,000 known rare diseases. February is Rare Disease Month because it contains the “rarest” number of days. The month culminates in Rare Disease Day, held annually on the last day …

Rare Disease Month: Overcoming Obstacles on the Road to Gold Read More »