It is estimated that over six million people in the U.S. have Alzheimer’s disease plus millions of other people throughout the world. Alzheimer’s is the most common type of dementia.…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Receiving a diagnosis can be difficult, and when you add into the equation that it’s for a rare disease, it can be a very lonely and isolating time. There is…
Rare Disease Diagnoses Get a Boost from Scientists’ New guidelines Professor Dame Sue Hill, Chief Scientific Officer of NHS England, recently interviewed with MedicalXpress citing the importance of unraveling the mystery…
From June 11th until the 14th, the Society of Nuclear Medicine & Molecular Imaging (SNMMI) Annual Meeting was held in Vancouver, Canada. At this meeting, Attralus Inc. shared new data…
The joy of watching your child grow and meet developmental milestones is not always granted to some parents. Clare’s mother, Allison, described her emotions to CHOP after noticing that Clare…
The diagnosis of rare diseases can be difficult; they may share symptoms with other disorders, many are not well known, and many don't have specific diagnostic processes. Ankylosing spondylitis acts…
Dr. Omar P. Haqqani, MD FACS is currently the Chief of Vascular and Endovascular Surgery at the Vascular Health Clinics. He has a keen interest in understanding and addressing vascular…
Fibromyalgia is a condition that is characterized by fatigue, memory issues, and musculoskeletal pain. It is also associated with depression, anxiety, and irritable bowel syndrome (IBS). Symptoms of fibromyalgia include…
Amanda Gilpin, a resident of Karratha in Western Australia, noticed that her little daughter occasionally would roll her eyes in response to some of her motherly advice. At times, she…
Diagnosing certain conditions can be difficult for many reasons, one of which is the similarity between symptoms of numerous diseases. Doctors can mistake one disease for another, which then impacts…
During this year’s commemoration of Rare Diseases, Leonard Saig M.D. a director at Bnei Zion Haifa spoke about Cushing’s syndrome, also called hypercortisolism. Cushing's syndrome is rare and difficult to…
Note: This is part two of a two part story. Don't forget to go back and read part one! Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom,…
Researchers from Australia’s Garvan Institute have joined with collaborators in Israel and the UK in identifying neuromuscular and neurological genetic diseases that have been difficult to diagnose due to the…
Too often a woman’s heart disease is labeled as stress and anxiety. If it is an autoimmune disorder, it is labeled as depression. Ovarian cysts are overlooked. The Katz Institute…
There is a need for more research into Leigh syndrome, as there are currently no FDA-approved treatments, and the patient population faces an unmet need. However, in order for there…
When Rachel Matthews birthed her twin boys, Aiden and Gavin, she was ecstatic. But just a day or two after Rachel had returned home with her boys, she received a…
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As we know, it can be incredibly difficult to receive the proper diagnosis for a rare disease. In fact, it typically takes at least seven years and numerous doctor's appointments.…
According to a recent article, a woman dealing with chronic fatigue and multiple UTI’s was not diagnosed with ovarian cancer until she was rushed into the hospital after collapsing. Ovarian…
Rare disease patients know what it's like to go without a diagnosis despite enduring symptoms. Doctors often don't recognize the disorders for a number of reasons, whether that's the similarity…
U.S. News carried an article reporting that in a recent study, researchers have identified minute amounts of cancer (organoids) in fallopian tube tissue. The significance of the discovery is that…
Julia Lefelar, a resident of Gaithersburg, MD, was telling a friend about her years of seeing different doctors trying to find the cause of her illness. After a while, her…
Oscar Warrent, a toddler from Norwich, England, has been through a lot in his two years of life. About three months ago, he was diagnosed with rhabdomyosarcoma, a rare form…
Today, follow along on a case study exploration to see how a 52-year-old woman finally received a diagnosis of stiff person syndrome (SPS), a rare neurological disorder. According to the…
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A case study recently reported that an asymptomatic 12-year-old boy was diagnosed with a solitary cutaneous mastocytoma in a rare case. Cutaneous Mastocytosis Cutaneous mastocytosis affects the skin, causing small flat brownish…
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