According to a story from WebMD, a recent study revealed that men with Crohn's disease, ulcerative colitis, or other forms of inflammatory bowel disease are at an increased risk of…
According to a story from gazettelive.co.uk, Jenni Mawson, who is currently 19 years old, has faced a years long struggle with chronic fatigue syndrome, which is also known as myalgic…
Smith-Magenis Syndrome (SMS) is caused by a deletion of the 17p 2,3 chromosome. the condition affects 1 in every 15,000-25,000 individuals. It often results in a sleep disorder, and various mental, physical,…
According to a story from BioSpace, a report on the results of the Orphan Drug Act of 1983 that was originally commissioned by the National Organization for Rare Disorders (NORD)…
As much as there is so much to talk about regarding dating while battling a chronic illness, I want to focus for a moment on what my long-term boyfriend has…
According to a story from CBS News, Roxli Doss, an eleven year old girl, was diagnosed with a rare and dangerous brain tumor called diffuse intrinsic pontine glioma. It is…
Patients, caregivers, and advocates alike all know how devastating and exhausting a rare disease can be, so it's important to find the moments to celebrate when someone overcomes the odds…
Leukodystrophy is the term used for a group of rare, progressive brain disorders which cause the brain's myelin sheath (the nerves protective covering) to either develop improperly or be destroyed…
Methylmalonic Acidemia (MMA) is a liver condition which affects the body's ability to break down food and fatty acids. A dietary imbalance or minor virus for these patients may spark a metabolic…
Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature death, within mid-childhood. What is Canavan…
This is an interview I did with Scott Davidson who has a podcast called Living Adaptive, where he interviews people that have adapted to significantly difficult situations in their lives.…
According to a story from pm360online.com, the biotechnology company Amicus Therapeutics recently announced that the first patient has received treatment in the company's Phase 3 clinical trial testing the company's…
Nontuberculous mycobacterial (NTM) lung infection occurs when someone inhales nontuberculous mycobacteria from the environment. There are various types of this bacteria, giving NTM different forms. But in all types of NTM,…
This story comes to us courtesy of a local Rhode Island TV station's "Small But Strong" news feature, highlighting the strength and tenacity of children. 10-year-old Zoie Mercier and her…
Angelman Syndrome (AS) is a rare genetic and neurological condition affecting roughly one person in every 12,000 to 20,000 individuals. People with AS often have learning difficulties, and struggle severely…
According to a story from Nature, Dr. Elliot Vichinsky thinks that almost a third of his patients with sickle cell disease ultimately die from causes that could be prevented. Sickle…
Morgan's story Morgan Gleason is a 20-year-old living with Juvenile Dermatomyositis. It's a rare autoimmune condition causing weak muscles and rashes in addition to other symptoms. As a result of her…
When my family friend's new girlfriend came to meet us, she made the best impression with her positive attitude and general ease in interacting with a large (and probably overwhelming)…
It feels good to rally together for a good cause, doesn't it? That must be the case for this Cedar Valley, Iowa community who answered the call when the mother…
According to a story from thenewsreports.com, the biopharmaceutical company XORTX Therapeutics, Inc., recently announced that the company and its partner Cato Clinical Research have received correspondence from the US Food…
A diagnosis means everything for a rare disease patient. However, to process 200 patient records manually, it would take the most dedicated physician approximately 40 hours. That's one full work…
According to a story from globenewswire.com, the biotechnology company Wave Life Sciences Ltd. recently announced that the tolerability and safety data from its Phase 1 clinical trial of its investigational therapy…
Immune Thrombocytopenia (ITP) is diagnosed by low platelet counts in the blood. It also causes impaired platelet production. This put patients at risk for serious bleeding as well as spontaneous bruising.…
Tay-Sachs disease and Sandhoff disease (also known as GM2 Gangliosidosis), and GM1 Gangliosidosis are neurodegenerative conditions. They are a result of a defective enzyme. This enzyme causes toxic gangliosides to accumulate within the…
Spinocerebellar Ataxia (SCA) refers to a group of neurodegenerative disorders. Ataxias are a component of the nervous system which control movement. SCA occurs when the ataxias in the brain or spinal…
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