The Neurological Alliance has released a report that details the experiences that rare, neurological disease patients in the UK share and calls for improvements for these people. Experts in the…
Most people are aware of various symptoms caused by the stress that we experience on a day-to-day basis. However, there are a variety of physiological reactions that affect our peripheral…
No deal Brexit means that the UK will be excluded from the 24 ERNs (European Reference Networks). Without the sharing of information, data, and research across countries, rare disease research…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
Before 1983, there were few treatments for rare diseases. Various obstacles stood in the way, including little representation for patients, few incentives, and a lack of resources. Fortunately, the Orphan…
Yash Cary knows what it's like to spend the holidays in the hospital. In fact, three of his last six Christmases have been at UNC Hospital. This is because Yash…
With the overall focus of the Reuters Pharma & Patient USA 2020 conference being the relationship between patients and drug manufacturers, a key topic focused on how companies can form…
According to an NBC AP news item, early results show that CRISPR, a “tool” that alters DNA permanently in blood cells, has the potential to not only stop the progression…
A recent article in the Encinitas Advocate heralded the dedication of Stan Crooke, n-Lorem Foundation’s CEO and founder. The nonprofit Foundation’s team acts as middlemen, working with patients who…
Meet Cameron Scott, eight-year-old superhero who has been declared free from his stage 4 brain cancer! Specifically, Cameron was diagnosed with medulloblastoma, a rare high-risk tumor which spread to his…
When she was born, Amy Parr was completely paralyzed from the neck down. Doctors were not optimistic about her future. Some said that she would not make it beyond her…
Many medical professionals have applauded artificial intelligence and machine learning in the drug development process for a long time, as they can increase the speed while decreasing the cost. However,…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
The Reuters Pharma & Patient USA 2020 virtual conference included a number of shorter presentations that focused on specific approaches to help drug companies better meet the needs of patients.…
According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that…
Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD's webinar, part…
According to a recent article in NewsWise, researchers have discovered that families with the PCSK9 gene remain healthy through their eighties and nineties. The study has been published in the…
Happy Friday! It may not be a white Christmas for everyone, but with parts of the U.S. receiving upwards of four feet of snow last week, it's close enough. Speaking…
By Danielle Bradshaw from In the Cloud Copy For the streets of downtown Wylie, Texas, Christmas came twice. It was only a week after the town threw their yearly Christmas…
To read part 1 of Nikole's Holiday Confession, click here. I feel guilty when my limitations force others to have to alter their holiday expectations. Like, how do I tell…
According to a story from ktla.com, a man from Nevada in his twenties has died after being hospitalized. The man was killed by hantavirus and was likely exposed to the…
Pumpkin pie, ginger-bread cookies, candy canes, and chocolates. Oh what a sweet season! A few nights ago my kids and I spent a few hours crouched over the wafting smells…
Admittedly, 2020 has been tough for a variety of reasons. One of the greatest? The spread of COVID-19, a novel coronavirus attributed to 72.8 million cases and 1.62 million deaths…
Currently, there are a host of health-related issues associated with diabetes. One specific health problem, which currently represents an unmet need, is pain associated with diabetic peripheral neuropathy. According to…
Author: Harsha K Rajasimha, MS, Ph.D. Editor: Sharlene Brown, Ph.D. When clinical investigators and study coordinators start planning a new study design, speed and efficiency are paramount. Running a clinical…
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