Life is ever evolving so it is important to remember that the storms in our lives do not always last forever. When I developed dystonia in 2001, I lost everything I was…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Granite, marble, porcelain, quartz—all materials leveraged in the development of beautiful, durable countertops. When people are choosing what countertop material to use in their homes, they often consider factors like…
One of the most successful healthcare services benefiting the public is newborn screening. Unfortunately, this life-saving health initiative is not provided for all rare diseases in some U.S. states. As…
Written by Sara Tompkins NOTE: The perspectives voiced in this article are solely those of the author. The development of drugs for rare diseases has always been a complex and…
From September 19-21, 2023, the Global Genes RARE Advocacy Summit was held in San Diego, CA. This event is a yearly convergence for rare disease stakeholders with a special emphasis…
Genomics is revolutionizing healthcare processes, offering the potential to enhance the lives of numerous individuals by enabling the early detection of treatable disorders and providing lifesaving therapies. Every year, thousands…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
From September 7-9, 2023, the Rare Fair took place in Research Triangle Park, North Carolina, with the option for online attendance. This event, which originated in 2018, is organized by…
Sara Kear and Jake Kaufman always knew that they wanted to start a family. So they did, welcoming into the world their beautiful children: Lola, now age 3, and Mills,…
The 2022 Medscape Physician Suicide Report shows that physicians, compared to the general public, have double the rate of suicides. Amna Shabbir, a doctor of internal medicine, felt compelled…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been spearheaded by The Dash…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been…
A rare disease diagnosis can often take many people by surprise. The diagnostic process can be long and tough; managing symptoms is often no less easy. Ellen Inouye discovered this…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
For the first two months of her pregnancy, Kristine Koser felt pretty good. Koser and her husband, Andrew, couldn't wait to welcome their daughter Aubrey into the world. Everything seemed…
When Tom and Tammy Parteleno first learned that their son Michael had Batten disease, it felt overwhelming. Scary, even. What would the future bring for their son? The Parteleno family…
A few words of comfort from NINDS, the National Institute of Neurological Disorders and Stroke as featured in MSN. This article is designed to help you cope with the pain,…
Lynch syndrome is a condition that increases the predisposition for certain cancers. People with Lynch syndrome should undergo frequent cancer screening for early diagnosis and treatment. But if Lynch syndrome…
It can be frightening and overwhelming to receive a rare disease diagnosis—and especially so if that rare disease is still poorly understood. When the Borofka family learned that their son…
Throughout her seventeen years alive, Daisha Felps has learned to face obstacles with resilience and strength. And obstacles come around more than she would like. You see, Felps has sickle…
Oakland A's Game Day Uplifting Experience September 15, 2023 Alameda County Coliseum, Oakland, CA Uplifting Athletes is excited to invite rare individuals and families to join us for a memorable…
617 words (source - 3% match) vs. 452 words (mine - 4% match) As our healthcare field continues to innovate and grow, we have seen more conversations regarding gene therapy…
As many people in the rare disease community know, it can be difficult at times to galvanize support for improved drug development. Many larger pharmaceutical companies may be hesitant to…
The ocean is my favorite place in the entire world. When I see it—its immensity, its beauty—I feel immediately at home in the world. I believe that everyone should have…
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