A dedicated Hull resident, Jonny Wightman, is preparing to cycle an impressive 100 miles to raise awareness and funds for rare diseases. As reported by
The FDA recently informed Muscular Dystrophy News that it has granted orphan drug designation to the experimental drug ISX9-CPC, a product of the IPS Heart
My symptoms began in 2001 and within 6 months I went from functionally uncomfortable to disabled to the point that I could barely lift myself
Pearl Jam front-man Eddie Vedder takes center stage in the new documentary “Matter of Time,” offering fans and viewers a rare, intimate glimpse into his
In 2014 the U.S. experienced a nationwide outbreak of EV-D68, raising concerns about children’s respiratory health. Acute flaccid myelitis disease (AFM) also spiked. EV-D68 is
The FDA is taking significant steps to update and streamline its regulatory approach to rare diseases, according to a recent article from BioCentury.com. Recognizing the
Editor’s Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the
Prader-Willi Syndrome (PWS) is a complex, rare genetic disorder known for its hallmark features: insatiable hunger, intellectual and behavioral challenges, and a host of physical
Researchers at the UK Dementia Institute in London (UK DRI) have identified a common denominator for various gene mutations that cause amyotrophic lateral sclerosis (ALS).
Living with a rare or chronic illness is a journey marked by uncertainty, resilience, and the power of community. For the last 10 years at
Alnylam Pharmaceuticals has launched a unique promotional campaign for Givlaari, its treatment for acute hepatic porphyria (AHP), that swaps the usual clinical narratives for something
In a significant stride for global health, the United Nations recently adopted a historic resolution dedicated to rare diseases. This move, as reported by Medics
Many people with rare diseases struggle to access personalized therapies simply because they lack a confirmed genetic diagnosis. This barrier blocks access to targeted treatments
Applied Therapeutics has encountered a significant setback in its quest to bring a new treatment to patients with a rare metabolic disorder. According to Biospace.com,
In a groundbreaking medical achievement, physicians have administered the world’s first personalized gene-editing therapy to an infant suffering from a rare and fatal genetic disorder.
Three hundred and ten: The number of days we had prior to our lives forever changing. On April 13, 2022, it was a day like
In the realm of rare diseases, effective communication can be a formidable challenge, especially when symptoms impact speech and expression. Remembering our very first post
Rebecca Hind, a woman from the UK, endured a life-altering ordeal after what she thought was a simple case of food poisoning turned out to
Today is World Blood Donor Day! This year’s theme, “Give blood, give hope: together we save lives,” reminds us that every donation is a gift of hope and a chance to save someone’s life. Join the movement—donate blood and help make a difference in your community. 🩸❤️ #WorldBloodDonorDay #GiveBloodGiveHope #PatientWorthy
Inspirational quotes from patients are profoundly meaningful because they offer authentic glimpses into the resilience, strength, and hope that arise in the face of illness and adversity. These words carry the weight of lived experience, making them deeply relatable and emotionally powerful. Direct patient quotes, as well as some of their favorite motivational quotes, reflect personal journeys-often marked by courage, vulnerability, and determination. Sharing these can uplift others facing similar challenges and remind caregivers, families, and communities of the human spirit's capacity to endure and inspire. Here is a glimpse of some of our favorites over the last 10 years!
If you are interested in sharing your story, click the link below.
bit.ly/3Sp7NIt
#PatientWorthy #10YearAnniversary #InspireHope #ShareYourStory
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