Usually when people think of a seizure disorder, they think of something called tonic-clonic seizures or episodes where a person loses consciousness, has muscle stiffness, spasms, and jerky movements.…
Lucy is now ten years old and stable, living her life as close to a normal ten-year old as possible. However, she was born with a super rare disease…
RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progress. What if we were able to share information with the power to revolutionise the current rare…
Happy Thursday! This week, we're highlighting an story about a woman with Bechet disease who advocates for herself and others. Next, we have an article discussing the difficulty of caring…
At just nineteen, Beth often didn’t feel well and regularly had a sickly pallor. When she went to a doctor, the doctor dismissed her and told her she just needed…
According to a publication from ScienceDaily, a new study of propranolol suggests explanations for its ability to shrink certain benign tumors in infants and relieve symptoms of hypotrichosis-lymphedema-telangiectasia syndrome. About…
According to a story from Drug Development Technology, the drug developer Translate Bio has recently reported interim results from its phase 1/2 clinical trial. This trial is testing the company's…
According to a story from the Scientific American, new research is revealing the potential of the human microbiome as a method for treating health problems. Research is also continuing to…
As reported in EurekAlert, an exciting new treatment method has entered the conversation to treat inflammatory bowel disease (IBD). Researchers have successfuly used mice population to show that precision cutting…
Groups like Cure SMA, the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, Parent Project Muscular Dystrophy (PPMD), and the National Organization for Rare Disorders (NORD) have a mission: The United States Senate…
As originally reported in The Rheumotologist, phase three trials for new lupus medicine have failed, disappointing the community that had high hopes for the drug anifrolumab. The community knows the…
According to a press release from American biotechnology company Neurogene, the Company has kicked off a sponsorship of Invitae Corporation's "Detect Lysosomal Storage Diseases" program, which will offer genetic testing…
According to a publication from Medscape, the first ever drug targeted for bladder cancer has shown even more impressive results in post-approval study. Erdafitinib was approved on an accelerated basis…
We love a good story about a community coming together! Firefighters across the Atlanta area came together to support a retired fire chief who has been partly paralyzed after being…
According to a story from Infectious Disease Advisor, a study has found that infection with the hepatitis C virus and cryoglobulinemia (high levels of cold sensitive antibodies) can lead to…
According to a story from Charcot-Marie-Tooth Disease News, Charcot-Marie-Tooth disease is actually somewhat common in the US compared to other rare diseases. In fact, it is estimated that around 150,000…
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Trust is vital when it comes to medical care. People put their most important questions and qualms into the hands of doctors and medical staff and expect they can rely…
August 3rd is CLOVES Syndrome Awareness Day! The CLOVES Syndrome Community (CSC) is an organization that "supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome" and…
According to a press release from British biotechnology company Immunocore, the Company has partnered with Pulse Infoframe (a Canadian data analytics company) to support the development of an international database…
According to a story from Cancer Health, a team of scientists affiliated with Mayo Clinic, UC San Francisco, and the Chan Zuckerburg Biohub have discovered a new rare, autoimmune disease…
Happy Thursday! This week, we're highlighting a PW contributor's story exploring blepharospasm and mental health and an article on two sisters with a rare connection. Following that, we have a…
I had the pleasure of attending the Glut1 Deficiency Foundation’s 2019 Conference. While this article can't possibly do the event justice and encompass all it had to offer, we will…
The struggle of living with a rare disease and dealing with insurance issues was in the spotlight on national television. During Tuesday night's 2020 Democratic debate for the president, Senator…
According to a story from Angioedema News, a recent clinical trial has demonstrated that the drug conestat alfa (marketed as Ruconest) was able to successfully treat 96 percent of acute…
According to a story from the Broad Institute, there are still many mysteries to uncover related to inflammatory bowel diseases, which includes the rare form ulcerative colitis. The understanding of…
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