Education Archives

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, […]

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

Education / Alexis Lynch

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

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Black History Month: Shining a Light on Equity in Healthcare

Diversity, Education / Alexis Lynch

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

Raising Awareness for Rare: January

Education / Alexis Lynch

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 / Alexis Lynch

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.

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Native American Heritage Month Improve access

Native American Heritage Month – Improving Access and Health Equity

Education / Alexis Lynch

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.

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No-Shave November: Cancer Awareness Month

Education / Alexis Lynch

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.

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rare disease awareness rare disease patients

Raising Awareness for Rare: October

Education / Alexis Lynch

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.

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national diversity month patient diversity rare disease

Global Diversity Month: Improving Awareness, Patient Diversity, and Access in Rare Disease Clinical Trials

Education / Alexis Lynch

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.

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Caring for Rare: Navigating a Complex Journey

Education / Alexis Lynch

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

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Education

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

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

Black History Month: Shining a Light on Equity in Healthcare

Raising Awareness for Rare: January

Clinical Trial Payments: Patient Insights in Rare Disease Trials

Native American Heritage Month – Improving Access and Health Equity

No-Shave November: Cancer Awareness Month

Raising Awareness for Rare: October

Global Diversity Month: Improving Awareness, Patient Diversity, and Access in Rare Disease Clinical Trials

Caring for Rare: Navigating a Complex Journey

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