In honor of World Duchenne Awareness Day on September 7th, Mal Duffin has invited us to share this app designed for parents whose children are living with Duchenne Muscular Dystrophy. Mal's…
A new study published at ScienceDirect.com sheds light on the profound social challenges faced by individuals and families living with rare diseases. The article examines how rare diseases, while medically…
Contributed by Scott Gray. Scott Gray is the co-founder and CEO of Clincierge, a provider of patient support services for clinical trials. Since 2015, Clincierge patient coordinators have managed logistics and reimbursements in…
When a family member is unable to care for themselves, proper training is essential for all parties involved. A case in point was the crisis Patti LeFleur was unable…
Did you know that November is National Family Caregivers Month? Celebrated annually, this month is designed to recognize the contributions of caregivers and honor their actions. In a recent…
November is officially recognized as National Family Caregivers Month, a time dedicated to recognizing and celebrating caregivers. The entire month is full of recognizing the effort and needs of caregivers,…
Patient Worthy was pleased to serve on the advisory committee for the development of this new resource. Caring for a child with a rare disease can be scary and confusing;…
Living with a rare disease can be difficult. Carlos, who has myositis, knows all about this. His mobility has been declining, and he is now in a wheelchair. His doctors…
At any time of the day, in any hospital, a nurse is giving instructions to a parent, spouse, child, sibling or friend of a patient, as to how to take…
At Patient Worthy, we’re all about rare diseases, and the focus of almost all our posts is the patient. Today, I want to shine a bright, white light on all…
Living with cystic fibrosis(CF) can change everything. When you hear that someone, whom you love deeply, has been diagnosed with something that is incurable your life changes dramatically. When reading…
Being a caregiver is among the most important jobs a person can take on, but it comes with its own set of perils: isolation depression sleep deprivation So, if you…
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