Alpha-1 Antitrypsin Deficiency Alpha-1 Antitrypsin Deficiency (AATD) is a rare disease caused by low levels of the Alpha-1 Antitrysin protein. It can lead to lung disease and liver disease. Liver…
According to a story from The Rheumatologist, there still remains much to be learned about the mysterious rare disease antiphospholipid antibody syndrome, which is also known as simply antiphospholipid syndrome.…
According to a story from Neuroscience News, a team of researchers based out of the University of Copenhagen have made an intriguing discovery that could give new insight into the…
Kennedy disease or, Spinal and Bulbar Muscular Atrophy (SBMA) is a form of Spinal Muscular Atrophy (SMA). SBMA causes muscle weakness throughout the limbs which results in impaired mobility (typical…
Cystic Fibrosis Cystic Fibrosis (CF) is a rare disease caused by a defected CFTR gene. It results in a buildup of mucus which impairs breathing and makes the lungs susceptible…
Alex Barker never planned on marrying someone with his same rare diagnosis, but he has to admit, the shared experience has made him and his wife closer. Alex has Moebius…
Pattern.Org Pattern.org was created by the Rare Cancer Research Foundation, a nonprofit dedicated to improving the lives of rare cancer patients by accelerating research. Pattern.org specifically, is a branch of…
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A recent article in Parkinson’s News Today reports that a reduction in a patient’s required medication and management of motor system disorders may be achievable with Deep-Brain Stimulation (DBS) for…
The most common treatment for autoimmune conditions such as ankylosing spondylitis, plaque psoriasis, Crohn's disease, juvenile idiopathic arthritis, and rheumatoid arthritis is currently a drug called Humira, created by AbbVie.…
"Something's just not right - this is beyond coincidence." Ocular Melanoma is a rare cancer which only affects 5 out of every one million people. Typically, it affects older white…
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Following a record number of approvals in 2018, the FDA has recently approved two new drugs with many more anticipated approvals later in the year. Trazimera to Treat Human Epidermal…
The longer patients live without a diagnosis, the longer they are living without the proper care and the proper treatment. The problem is twofold when a patient is diagnosed incorrectly.…
According to a story from Financial Buzz, the biopharmaceutical company Albireo Pharma, Inc. issued a statement on Rare Disease Day which emphasized the company's continued commitment to progressive familial intrahepatic…
The Patient-Centered Outcomes Research (PCORI) The PCORI is a nonprofit whose primary main mission is to help support research that will allow patients to make informed healthcare decisions. What makes…
Cassie Bebout is an Auburn University undergraduate student, on track to graduate this May. She chose the school for one primary reason- it is the home of Dr. Doug Martin…
According to a story from rdmag.com, a recent study is offering a possible solution to one of the difficulties in treating ovarian cancer. This difficulty is the fact that many…
Happy Wednesday Everyone! We hope everyone had a good St Patrick's Day. Today, we're highlighting a story from PW contributor Denise Crompton on grief. This is followed by an article…
According to a story from yahoo.com, actress Kathy Bates realized when she was fairly young that she was at an increased risk for breast cancer. This was because both her…
The book Five Feet Apart was first released to the public in November 2018 and on March 15th, 2019, a film based on the novel was released into theaters. The…
Shifting Contracts Over the years the United States healthcare system has shifted more toward reimbursement models that are outcome-based instead of service-based. In essence, this means that instead of paying…
According to a story from the Yale Daily News, Brian Wallach, class of 2003, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in November of 2017. Although being…
Rett Syndrome Rett syndrome is a rare and progressive neurodevelopmental disorder caused by mutations to the MECP2 gene. While it affects all ethnic and racial groups, it is found almost…
Rare diseases such as Tourette's syndrome and cystic fibrosis can be, among all of the other challenges that come with their diagnosis, extremely isolating. A recent article on Psychology Today explains…
Emerging Indie pop artist Betsa has recorded a song to raise awareness for an important cause – one that has been making national headlines in recent weeks. Her new release…
According to a story from prnewswire.com, the biopharmaceutical company Dompé recently announced that the company has received the 2019 Industry Innovation Award from the National Organization of Rare Disorders (NORD).…
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