According to a story from news-medical.net, a recent study that the reduced expression of miR-125a-5p results in an increase in the concentration of the protein TIMP-1. Prior research has associated…
Originally reported by The Jerusalem Post, many adopted children from Eastern European countries suffer from fetal alcohol spectrum disorder caused by their mothers drinking alcohol excessively when pregnant. Many Israelis families…
February 16, 2018 Governor Herbert Declarations: Rare Disease Day on February 28th Undiagnosed Rare Disease Day on April 29th Park City, Utah. (February 16, 2018) – Rare and Undiagnosed Network…
Happy Friday, Patient Worthians! This week, we have a video from a PKU patient telling a first-hand account of the deterioration and serious consequences he faced after he went astray…
Nothing prepares families for the myriad of tests with strange sounding names that are required when they start to look for solutions to the problems brought about by a member's…
Spark Therapeutics will be hosting a conference call this Tuesday. For those interested in the business side of therapy, this is an interesting opportunity to observe. Find out more about…
A wealthy do-gooder is championing Idiopathic Pulmonary Fibrosis (IPF). No, it's not Tony Stark (a.k.a. Ironman). But there is a mega-force super power uniting global innovators, researchers, and healthcare entrepreneurs…
Sophia Campa-Peters, a little 9-year-old suffering from a rare disease that resulted in several strokes, had a successful brain surgery just a few weeks ago, as reported Lubbock Online. The…
According to a story from Newswise, The University of Adelaide in Australia received a $1.19 million grant in order to spearhead an international research project. The project's aim is to…
There are fifty genetic diseases that can be characterized as lysosomal storage diseases (LSDs). Gaucher disease can be characterized as such. LSDs make up about one in every 8,000 births…
Welcome back, Patient Worthians! This week, we have an opportunity for Parkinson's patients, and an update on an Amyloidosis app. We also have two stories of teenagers whose lives suddenly…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
A recently published scientific letter in the Spanish medical journal, Endocrinología, Diabetes y Nutrición draws a link between the combined use of inhaled steroids and liver enzyme blockers and the development…
According to a new study, people who suffer from rare disease are more prone to suffer from levels of anxiety, depression, pain and fatigue. The findings are proof that special…
According to a post from the National Organization of Rare Disorders, the organization has joined thirty-seven other patient and provider groups and organizations in opposition to the "Right to Try"…
Social and lively teenager Cindy Redmond's life was forever changed when her friend's step-father blew an air horn directly in her face, damaging them forever, originally reported by Daily Mail.…
According to a story from the Washington Post, Vanellope Hope Wilkins had to immediately be placed in sterile plastic when she was born. This was because her heart, while functional,…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
Come to the 14th Annual WORLDSymposium in San Diego to learn more about the latest news and research in lysosomal diseases! Discuss the most recent information surrounding lysosomal diseases to…
According to a story from Health News and Information, The National Eye Institute presented Juergen Naggert, Ph.D., with a grant in order to study genetically connected changes that occur in…
Happy Groundhog Day, Patient Worthians! It might not feel like it, but spring is its way! This week, we have a story of a family who copes with the challenges…
According to EurekAlert!, covering a study conducted by Oregon State University, individuals living with rare diseases are more likely to experience a poorer quality of life. They are at high…
Researchers from Duke Health are hoping to discover new treatments for Lyme disease since the only way to currently manage the disease is by taking consistent antibiotics, which can be…
As an adult living with rare disease, there have been significant gaps in my employment history. I am sure many adults with health complications experience their workforce years this way,…
Happy Friday Patient Worthians! Believe it or not, we've almost made it through the first month of 2018! This week, we have a story of a young girl with Sanfillipo…
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