Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
A recent study in MedicalXpress investigates a mutation that contributes to Parkinson’s-like symptoms in children. The mutation interrupts the movement of dopamine. The new study was conducted using fruit flies…
Dr. Duneel Dhand, an internal medicine physician and author, told KevinMD about two events in his life that motivated him to treat his patients with compassion. A Doctor’s Character As…
Diagnosis can be difficult to achieve for rare disease patients. Some patients experience years of searching for the correct diagnosis, with others receiving the wrong one along the way. Changes…
Pfizer Rare Disease is an approach taken by pharmaceutical giant Pfizer to develop treatments for rare and orphan diseases. In the past, the company has worked with the National Newspaper…
The diagnostic journey for rare disease patients can be long and frustrating. In fact, 28% of rare disease patients spent a minimum of seven years waiting for their diagnosis, and…
A majority of individuals who have strokes are over the age of 60. But what happens when younger individuals have unexplained strokes? What causes these to happen? According to a…
According to a recent article in MedCity News, families with children who have a rare disease wait on average for five years before receiving an accurate diagnosis. It is…
Rare disease research faces many obstacles: lack of participants, lack of funding, and lack of interest are just a few. Now, the charity Cerebra has launched a network to take…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on May 20, 2021. The primary focus of the webinar was a discussion and overview of drug pricing proposals that…
As reported in the Northhampton Chronicle;, sometimes it's our toughest challenges that inspire us to grow taller than we thought possible and to push past our notions of our limits.…
As reported in the Chicago Tribune; Jason Matthews spent his 69 years immersed in only the most thrilling of adventures. After three decades in the CIA, Matthews used eloquence and…
Emerging Sources Citation Index (ESCI), The Web of Science Edition, herein reports a case first recognized in a two-day-old newborn with a decreased red reflex in her right eye. The…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
According to a recent article published in the Dove Medical Press of Manchester, UK, intestinal failure centers are receiving an increasing number of adults presenting with gastrointestinal (GI) dysmotility. Dysmotility…
Written by Harsha K. Rajasimha, MS, PhD & Sharlene Brown, PhD Clinical trials are the regulatory mechanisms agencies like the Food and Drug Administration (FDA) use to evaluate and review…
Research has identified that individuals with sleep issues are at a higher risk for developing chronic diseases. Unfortunately, many with sleep disturbances are undiagnosed. It's estimated that between 40 and…
Life as we know it has been shut down and completely changed for over a year. When the global pandemic struck, our world was also completely turned upside down. My…
Written by Anis Mohd Nor I first became a mother in 2017. The pregnancy was a bumpy one - while I felt blessed to be pregnant after several years of…
Sanath Ramesh, a software engineer, created the nonprofit Open Treatments after his son was born with an extremely rare condition without any viable treatment options. Raghav, now two and a…
Since its inception, the Clinical Data Interchange Standards Consortium (CDISC) has worked to advance data standards to the highest possible quality. These standards are then used to make data more…
On April 28th, the virtual World Orphan Drug Congress USA 2021 was held. The program featured a variety of subjects relevant to the development of orphan drugs and the rare…
On April 28th, the virtual World Orphan Drug Congress USA 2021 was held. The program featured a variety of subjects relevant to the development of orphan drugs and the rare…
No one can truly prepare for life raising a child who has a rare disease. But as exhausting as it can be, Lori Dunham describes that raising her little girl…
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