rare disease Archives

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

Education / By Suzanne Hamberger

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

Education / By Suzanne Hamberger

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 …

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Empowered Patient Podcast with Karen Jagoda: Rare Disease

Media Coverage, Podcast / By Alexis Lynch

Providing Global Concierge Services to Facilitate Rare Disease Clinical Trial Participation and Retention

Caring for rare: Celebrating Rare Disease Day 2023

Enhancing Patient Access and Retention in Rare Disease Clinical Trials

Media Coverage / By Alexis Lynch

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 …

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Black history month improving equity in healthcare

Black History Month: Shining a Light on Equity in Healthcare

Diversity, Education / By Suzanne Hamberger

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 …

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Rare Disease Month: Overcoming Obstacles on the Road to Gold

Education, General Interest / By Suzanne Hamberger

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 …

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The ‘voice of the patient’ needs to be heard in clinical trials: study

Raising Awareness for Rare: January

Education / By Suzanne Hamberger

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 …

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woman doing clinical trial payment or reimbursement for clinical trial

Clinical Trial Payments: Patient Insights in Rare Disease Trials

Education / By Suzanne Hamberger

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.

Native American Heritage Month Improve access

Native American Heritage Month – Improving Access and Health Equity

Education / By Suzanne Hamberger

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.

rare disease

Purple Day 2022: Raising Awareness for Rare Epilepsies

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

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

Empowered Patient Podcast with Karen Jagoda: Rare Disease

Enhancing Patient Access and Retention in Rare Disease Clinical Trials

Black History Month: Shining a Light on Equity in Healthcare

Rare Disease Month: Overcoming Obstacles on the Road to Gold

Raising Awareness for Rare: January

Clinical Trial Payments: Patient Insights in Rare Disease Trials

Native American Heritage Month – Improving Access and Health Equity

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