This study aimed to uncover types of daily healthcare information provided hospitals to
family caregivers of individuals with rare diseases. The study seeks to determine whether …

Background Finding reliable information on one of more than 7000 rare diseases is a major
challenge for those affected. Since rare diseases are defined only by the prevalence …

Understanding rare disease patients' and caregivers' health information-seeking behavior is
essential for creating useful resources. Due to the rarity of the diseases, available …

Background: Despite diverging definitions on rare conditions, people suffering from rare
diseases share similar difficulties. A lack of experience by health professionals, a long wait …

Patients who are diagnosed with rare diseases often encounter a difficult health care
journey and face many challenges due to their medical conditions. In addition to the …

Background Little is known about the availability and technical quality of online information
related to the medical care of people with disability, despite the potential of this information …

Background Receiving a diagnosis that leads to severe disability in childhood can cause a
traumatic experience with long-lasting emotional stress for patients and family members. In …

In response to the limited information about health information and training needs among
persons with disabilities, a collaborative group of Alabama researchers, educators, and …

While digital tools, such as the Internet, smartphones, and social media, are an important
part of modern society, little is known about the specific role they play in the healthcare …

Context: Even in today's information age, finding comprehensive and valid information on
rare diseases is difficult for those affected. A “National Action Plan for People with Rare …