As originally reported in Medical Xpress, CRISPR has been a hot conversation starter in recent years. It has been framed as gene editing made easy: cheaper and simpler than previous…
According to a story from BioPortfolio, Acceleron Pharma and the Bristol-Myers Squibb Company have announced recently that the US Food and Drug Administration (FDA) will review the supplemental Biologics License…
The iPain Summit 2019 took place from November 14th-16th, 2019. Patient Worthy had the privilege to attend this event and cover it live on social media. This summit was focused…
At the International Pain Foundation's iPain Summit, held this year from November 14th-16th, a wide variety of topics related to the challenges faced by patients with chronic pain were discussed.…
As reported in the Guardian, at Bath University, scientists have created a groundbreaking technology for the future of medication: artificial nerve cells or neurons created on silicon to replace deteriorating…
Happy Thursday, Readers! This week we're highlighting four articles on rare disease and chronic illness patients and ways to provide support that goes beyond treating physical symptoms. First, we have…
According to a story from BioPortfolio, the biopharmaceutical company Incyte Corporation has recently announced that the company's New Drug Application (NDA) was recently accepted by the US Food and Drug…
Contact: Britta Vander Linden [email protected] 917.604.6518 30 million Americans need more treatment and diagnostic opportunities https://everylifefoundation.org/rare-disease-community-calls-on-congress-fda-to-enact-life-saving-public-policy-solutions/ (Washington, D.C., December 4, 2019) Hundreds of rare disease advocates from around the country were brought to Washington,…
Getting a diagnosis for a rare disease is hard. Not many people are familiar with the many obscure symptoms and manifestations of these diseases. Because of this, patients with rare…
As originally reported in Medscape Neurology News, for the last few years, doctors and researchers have been excited by the new prospect to use an obesity drug, fenfluramine, to treat…
As originally reported in Mirror, when Sian Hopper was in secondary school, she began to get headaches. She attributed them to stress: she had been studying for her GCSE exams,…
As originally reported in CheckOrphan, there's good news today for adult patients with acute hepatic porphyria, a genetic disorder which causes pain and paralysis. The Food and Drug Administration (FDA)…
From November 14th-16th, 2019, iPain Summit 2019 took place in Los Angeles, CA at the UCLA's Meyer and Renee Luskin Conference Center. Patient Worthy had the privilege to attend and…
Kristina Wolfe and Seth Rotberg first crossed paths on LinkedIn, recognizing one another as fellow patients. Kristina is passionate about public heath, health economics, and the way non-holistic approaches to…
Phase 3 Trial Results from the Phase 3 PREVENT study for neuromyelitis optica spectrum disorder (NMOSD) were extremely positive. 98% of patients in the treatment group did not experience a…
People who live with rare diseases have found that it is often difficult to get a diagnosis. Doctors look to common issues before they consider diseases that affect an…
Global Blood Therapeutics was recently granted priority review by the FDA for their new drug Oxbryta. This drug is meant to treat sickle cell disease, and it is the…
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…
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