Education

rare disease awareness rare disease patients

Raising Awareness for Rare: One Month at a Time

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.

rare disease parents and family

Caring for Rare: Navigating a Complex Journey

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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newborn screening awareness month clinical trial

Newborn Screening Awareness Month: Creating a Federalized Screening Program

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 …

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covid-19 patient safety travel recruitment retention

COVID-19 Solutions: Prioritizing Safety, Recruitment, and Retention

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 …

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LGBTQ pride month

Celebrating Diversity: LGBTQ Pride Month 2021

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, …

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

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 …

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online patient payment

Do you know which patient payment method is right for your clinical trial?

Do your clinical trial patients need stipends, reimbursements, or a combination of payment types? Not sure? Many study teams are unsure about the different types of patient payments or how to decide which ones are appropriate for their study.   Multiple payment options and country-specific requirements can seem overwhelming to a study team. Understanding industry terminology …

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We are monitoring the impact of the COVID-19 Delta Variant on the travel and clinical trial industries.