Patient Worthy's main focus is to share information and help patients in any way we can. We recently saw this video and thought that it was relevant for our followers. Created by Snow Companies, it is a virtually co-created user-generated video…
Because of the current global situation involving coronavirus (COVID-19), many medical organizations have canceled or postponed their annual meetings. The American Academy of Allergy, Asthma, and Immunology (AAAAI) is one…
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 Esmo, the results of a recent phase 2 clinical trial bode well for pediatric and adolescent patients with neurofibromatosis type 1 (NF-1), a rare genetic…
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…
Balance issues are often a difficult symptom to detect and track in those with multiple sclerosis. It is important that these problems are addressed by doctors, as they can lead…
Living with a rare disease during this pandemic is scary. There are additional concerns, risks, and worries that must be considered. Those affected by adrenoleukodystrophy have to keep many of…
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 the National Gaucher Foundation, the use of gene therapy in order to treat Gaucher disease has long been floated in medical theory, but only in…
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…
According to a story from Healio, a recent study that was published in the scientific journal BMC Rheumatology revealed that it was uncommon for patients living with ankylosing spondylitis to switch from…
Research has recently been published in Nature Communications that shows the success of a new gene therapy in the treatment of Huntington's Disease. This therapy, an adeno-associated virus-based gene therapy, was tested…
As originally reported in Live 99.9; when Melissa and Chris Courson found out the baby they were expecting in a few months would be born with the rare thantophoric dysplasia,…
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…
Those diagnosed with paraganglioma-pheochromocytoma, squamous cell carcinoma of the skin (cSCC), adrenocortical carcinoma (ACC), and carcinoma of unknown primary (CUP) may soon have an additional option for treatment. According to…
By Jodee Redmond from In The Cloud Copy Frankie Hewitson spent more than her fair share of time in the hospital during her childhood. The 27-year-old was diagnosed with three…
By Danielle Bradshaw from In The Cloud Copy Bill Bradford has made helping others a lifelong habit, but now this veteran and former paramedic needs the help of others to…
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