According to a story from stuff.co.nz, a two year old boy named Rhys from Auckland, NZ has spent much of his young life in the hospital. This is because he…
According to a story from BioPorfolio, a recent study first published in STEM CELLS Translational Medicine describes a unique stem cell procedure that has the potential to be a major step…
Current treatment for Huntington's disease only relieves symptoms, allowing for the progression of the disease to continue. UniQure, a company that works with gene therapies, aims to change this. They…
As originally reported in Yahoo Finance, the coronavirus is disrupting many of our expectations of how we planned to live out the next few months. Some frequenters of the hospitals…
According to a story from Medpage Today, rheumatologists could play an important role in treating patients with the most severe cases of COVID-19/coronavirus. This is because some of the drugs…
Molly Ouimet was three years old when she got her first kidney stone. Molly, who wasn't very vocal at the time, had a difficult time explaining the pain that she…
According to a story from mdmag.com, a phase 2 trial testing the drug avapritinib as a treatment for systemic mastocytosis is currently ongoing. The results so far suggest that the…
According to a story from Benzinga, the Novartis Company AveXis recently announced the results of long term studies testing the impact of Zolgensma, a gene therapy treatment that was approved…
According to a story from The Intercept, Gilead Sciences' antiviral drug remdesivir, which is being tested as a treatment for coronavirus/COVID-19, was just given Orphan Drug designation by the US…
As originally reported in European Pharmaceutical Manufacturer Magazine, Chiesi, an Italian pharmaceutical company, has announced they will be launching a new division for rare disease research and therapy innovation. The…
If the world were as careful in everyday life Perhaps I’d be sick less, I’d feel much less strife It's the small precautions, like washing your hands That for me…
Biological engineers at MIT are using a new technique to study various organs and their interaction with our immune system. According to a recent article in Science Daily, the researchers…
Identifying biomarkers may be an improved method of classifying Alzheimer’s and Parkinson’s. As outlined in a recent article covered by Parkinson's News Today, both diseases are diagnosed for the most…
By Jodee Redmond from In The Cloud Copy Massachusetts Institute of Technology (MIT) researchers have recently announced they have identified hundreds of genes that are required for neuron survival. The…
Sunday, March 15, 2020 was the sixth International Stiff Person Syndrome (SPS) Awareness Day. The patients who often are forgotten on this day of awareness are the rarest, most severely…
859 words vs 970 words 8% An article recently published in Science Daily quotes the results of a study showing a favorable outcome for six out of nine x-linked chronic…
By Rachel Whetstone from In The Cloud Copy New research is exploring the relationship between circadian rhythms in the brain and bacterial fragments. It’s possible that bacteria has an influence…
By Natalie Homan from In The Cloud Copy Spina bifida is a condition that appears when a developing baby’s neural tube doesn’t close completely. The most severe form of spina…
Hi everyone, These past few weeks have been a lot- for everyone. People in the rare disease community may be struggling with aspects particular to their disease state, like how…
It's easy to feel helpless right now. You're told to stay home and just wait it out. So you're stuck feeling isolated and angsty, knowing there's nothing you can personally…
As originally reported in Discover Magazine, Huda Zoghbi took an unexpected route to winning the Breakthrough Prize in Life Sciences in 2017 for her discoveries of the genes responsible for…
Researchers all over the world are hard at work trying to develop both treatments for Covid-19 and vaccines for the illness. Professors of rheumatology at the University of Alabama, Randy…
Social distancing sucks in so many ways. I'll be the first to admit it. You can feel isolated, alone, stuck, scared. But, there are some upsides to this crazy situation.…
Kidney disease is following other disorders as a target for new and improved machine learning. As published in a recent edition of Science Daily, pathologists have often classified kidney diseases…
Rare disease advocates in India are pushing for the Health Ministry to create a new fund for rare diseases. Additionally, they're pushing for medicines and medical equipment used for these…
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