When your child is constantly at risk of hypoglycemia and their health and life is threatened in the case of any major problem, you have no other choice but to…
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The Golden Age of Health and Wellness is Almost Here A recent article in the Vancouver Weekly News describes the euphoria that accompanied the official declaration of the completion…
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…
Researchers at the University of Pennsylvania are working on a new potential gene therapy for Duchenne muscular dystrophy (DMD). DMD is a rare form of muscular dystrophy that primarily affects…
According to a story from marketscreener.com, the biopharmaceutical company Anavex Life Sciences Corp. has announced that its experimental product candidate ANAVEX2-73 has earned Rare Pediatric Disease designation from the US…
WHIM Syndrome WHIM syndrome is a form of primary immunodeficiency. It is caused by a mutation in the CXCR4 gene. WHIM stands for Warts, Hypogammaglobulinemia, Infections, and Myelokathexis. Throughout their…
By Jodee Redmond from In the Cloud Copy The results of a recent study published in Pompe Disease News suggest that a molecular “tag” used to improve the distribution of…
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…
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“Myasthenia” means “muscular weakness”. According to a recent article in The Star, studies in Asia indicate that there are approximately five new cases of myasthenia gravis (MG) reported each…
Gracie Mellalieu, a twelve-year-old girl from Wales, is excited to headline the Christmas concert at St. Asaph Cathedral. This accomplishment comes after Gracie gained attention for a thank you song…
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…
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…
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To…
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…
According to a story from metro.co.uk, Harley Bond was three years old when he was first diagnosed with Sanfilippo syndrome type B, a rare progressive genetic disorder. Now five years…
According to a story from the Malvern Daily Record, the biotechnology company Exelixis, Inc. has recently announced that its partner company Ipsen BioPharmaceuticals Canada Inc. has had its drug cabozantinib…
The All in 1 iPain Summit Los Angeles, CA #GetOnTrack This conference is dedicated to patients that are dealing with chronic, long term pain. This event will inform attendees about…
Nobody expects a shocking diagnosis for their significant other right before one of the most important days of their lives. Ariona Kryeziu's life was altered significantly when her fiancee, 20-year-old…
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…
According to an article from The Plymouth Herald, Miriam, a 9-year-old from Yelverton, U.K., has been nominated for CBBC's Big Heart Award for the care she has provided to her…
Geisinger was founded by Abigail Geisinger over 100 years ago. It now has 13 hospitals and 2 research centers. They just released a new study examining the severity of symptoms…
According to a story from The Times of Israel, Jenni Kleinman Berebitsky died the past August at age 43 due to complications of amyotrophic lateral sclerosis (ALS). The woman was…
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