Trigeminal neuralgia is characterized by intense and debilitating chronic pain affecting one side of the face. Currently, there are a number of treatment options to reduce pain: tricyclic antidepressants, anticonvulsants,…
It has historically been difficult to encourage the development of therapies for patients with rare diseases. To overcome this, the Orphan Drug Act was passed in 1983. This act…
On January 7th, the Jacksonville Jaguars and Tennessee Titans faced off on the football field. With just 2:51 left in the game, Josh Allen returned a fumble for a touchdown,…
Genethon is a non-profit organization committed to the design and development of gene therapies for rare diseases. This unique company is a pioneer in identifying genes relating to genetic…
We have all at one time or another experienced pain and suffering of some kind. I sure have, living with dystonia for over 20 years, the first 5 of those years being…
25-year-old Maia Stock was excited at the chance to get away from snowy Canada and bask in the warmth of the Puerto Vallarta sun—relaxing at the resort, swimming in the…
Have you ever heard of Orphan Drug designation? This designation is granted by the U.S. Food and Drug Administration (FDA) to drugs or biologics intended to diagnose, prevent, or…
Lucy Beall's parents were expecting a fairly normal and straightforward birth. But when Lucy was born, the entire room was shocked. She weighed just six pounds and her skin…
2019 was an extremely difficult year for Jay Crow. In February of that year, Crow lost his mother Megan, who was just 33 years old, to heart failure. Just…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Generalized arterial calcification of infancy (GACI) and autosomal recessive hypophosphatemia rickets type 2 (ARHR2) Awareness Day is recognized each year on Feb 1. This is a time for spreading awareness…
Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every day… and…
In a previous post, I shared what it took to heal my eosinophilic esophagitis. In this post, I share a few tasty and healthy foods, and a recipe for organic…
Prematurity and formula-feeding heighten the risk of necrotizing enterocolitis (NEC), a serious gastrointestinal issue. However, NEC is still poorly understood; in many cases, the exact cause is still unknown.…
Doddie Aid, which begins January 1st and continues for the following six weeks, aims to encourage people to get active while raising funds to support research into motor neuron disease…
Have you ever heard of a natural history study? In short, a natural history study studies people who have, or are at risk of developing, a specific medical condition;…
There is no cure for multiple sclerosis (MS). However, treatment advances have helped people to live longer, happier lives. Current therapeutic options include corticosteroids, plasmapheresis, and disease-modifying drugs. Recently,…
In 2020, the U.S. FDA granted Orphan Drug designation to KB407, an investigational gene therapy for patients with cystic fibrosis (CF). More recently, at the start of 2023, the…
Seven years ago, David and Amber Negele married. The pair couldn’t wait to begin their blissful wedded life together. Just a few years after their marriage, David and Amber decided…
From November 10-14, 2022, various stakeholders within the rheumatology sphere connected at the American College of Rheumatology’s (ACR) Convergence 2022. During ACR Convergence, described as the world’s premier rheumatology experience,…
A January 2023 news release from biopharmaceutical company Avidity Biosciences, Inc. ("Avidity") shares that the company's therapy, AOC 1020, earned Fast Track designation from the FDA for the treatment of…
Currently, the standards-of-care for lupus include anti-malarial drugs such as hydroxychloroquine, corticosteroids and immune-suppressive therapies, and biologics such as Benlysta. But new therapies are urgently needed, especially as anywhere between…
Before you read on, make sure to check out Part 1 of Jennifer's story. In Part 1, we discuss what multiple sclerosis is, its symptoms, treatment options, and Jennifer's journey from diagnosis…
The Rogers, Minnesota hockey community is strong and unified; if something happens to someone in their ranks, they step up to assist. But nothing could have prepared them for the…
A few years ago, Dean Mooney began experiencing some troubling health symptoms. His left hand became stiff and sometimes difficult to use. Later, he developed a mild arm tremor. After…
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