One thing many rare patients know is that many rare diseases do not currently have any therapies. However, that is changing. There are so many possible solutions that need coordination,…
According to a blog post from Visante, concerns from patient groups and advocates about the safety of a recently introduced tube feeding connector device called ENfit have caused major consternation…
I have been writing for this website for a little over 2 years. Neatly collecting, reading, and reporting on stories of people with rare conditions and disabilities. Little did I…
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Amber’s determination to find a miracle for her son Maxwell is detailed in a recent BuzzFeed article. Maxwell and his twin sister, Riley, were born in March 2017. For…
Happy Thanksgiving week! This week we're doing a special edition of Editor's Choice. Instead of choosing four article from the past week, we're bringing back four articles about celebrating and…
When you know your days are numbered, you might stop to think how you want to spend those last days. At times, medical emergencies can put patients into conditions or…
Happy Friday, readers! We hope everyone's staying warm! This week we're highlighting a new patient story from a rare disease parent in the Czech Republic. Next, we have ann article…
Cigarettes have been repackaged for the 21st century. The new millennial pass-time is vaping, an electronic device that heats a liquefied solution of nicotine or THC that becomes vaporized as…
According to a story from The Squamish Chief, mother Emily Tomlinson is amazed by the capabilities of her three year old son Nash Smillie. Nash was born with a severe…
For people with sickle cell disease, a common, painful symptom is vaso-occlusive crisis, which is when blood circulation is blocked by sickled red blood cells. This restriction of circulation results…
According to a story from wptv.com, young mother Sierra Henderson, whose first child is just 18 months old, reported to an urgent care facility recently with some unusual symptoms: a…
By Rachel Whetstone from In the Cloud Copy Although rare diseases are uncommon by definition, a new study shows that the total number of people affected by rare diseases is…
Modern medication has the ability to save lives and improve living standards. However, medicine is less beneficial when patients’ prescribed treatments are delayed, and entirely ineffective when patients forgo treatment…
Patients in the ICU are under constant surveillance, with consistent monitoring of their blood pressure, blood cultures, and other laboratory markers. These things help doctors understand how the patient is…
Over the course of the past nineteen years, scientists were able to successfully map the entirety of the human genome and there have been great advances in genetic testing. These…
A New Study A recent study published in Nature Immunology and conducted by researchers at the University of Basel has produced influential results regarding primary immunodeficiency disorders (PID). These rare disorders…
Maddie Brown Brush is famous for being on TLC's Sister Wives, and she welcomed her daughter, Evangalynn Kodi, into the world with her husband on August 20. Brown Brush described…
Porphyria is a rare blood disease, with less than 20,000 cases in the U.S. every year. Because of this rarity, many people are unaware that the symptoms they experience have…
Happy Thursday, Friends! It's getting cold outside! This week we're highlighting a new patient story from the Czech Republic on a younger patient diagnosed with a disease generally associated with…
The Bio Patient and Health Advocacy Summit of 2019 was recently held in Washington D.C. One of the panels addressed patient engagement with the FDA and how patients, advocates, families, and organizations…
According to a story from Pulmonary Advisor, the rare condition pulmonary arterial hypertension (PAH) is mostly known for the impacts that it can have on the lungs and on the…
This year, Patient Worthy will have the privilege to cover one of the planet's foremost patient centered events on chronic pain: The International Pain Summit, which will be held from…
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About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common…
Note: The author does hold immense compassion for children and teens and their families living with rare disease. Compassion is empathetic in sorrow, rather than wishing there is no sorrow,…
According to a posting from clinicaltrials.gov, an observational study will be focused on the identification of biomarkers for pediatric congenital heart disease and pulmonary arterial hypertension. Biomarkers derived from the…
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