Background Rare disease patients often struggle to find both medical advice and emotional
support for their diagnosis. Consequently, many rare disease patient support forums have …

Children with disabilities and their families are often socially isolated. To integrate them into
society, it is important to improve their access to services and encourage families to …

Background: Caring for children with special needs can be challenging and stressful for
parents. Access to information and support is critical for parents to overcome these …

The goal of the InfoAble Portal project was to improve access to disability-related health
information and the Center for Disability Resources Library's services for Family Connection …

Background: The Internet can be an invaluable resource for obtaining health information by
people with disabilities. Although valid and reliable information is available, previous …

Background Home Internet of Things (IoT) services and devices have the potential to aid
older adults and people with disabilities in their living environments. IoT services and …

Background Rare diseases are serious and chronic diseases that affect no more than 1
person in 2000 (in European Union criteria). Patients suffering from RDs may come to the …

Background Late and misdiagnoses of rare disease patients are common and often result in
medical, physical and mental burden for the patient, and financial and emotional burden for …

Background Generation Z (born 1995-2010) members are digital residents who use
technology and the internet more frequently than any previous generation to learn about …

Background Social media provides a potential avenue for genetic counselors to address
gaps in access to reliable genetics information for rare disease communities. However, only …