Education

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 …

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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 …

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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 …

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

Raising Awareness for Rare: January

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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Alzheimer's Awareness and National Caregiver Month

Alzheimer’s Awareness and National Family Caregivers Month

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.

Native American Heritage Month Improve access

Native American Heritage Month – Improving Access and Health Equity

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.

cancer awareness no-shave november

No-Shave November: Cancer Awareness Month

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.

rare disease awareness rare disease patients

Raising Awareness for Rare: October

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.