Beyond Reason
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Laura DeKraker Lang-Ree, a cancer caregiver to her daughter Cecilia who survived childhood leukemia.…
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Beyond Reason
Throwback Thursday: Updates on Patients from Patient Worthy’s Past
Mama we are all different colors and we are all beautiful. For our final Throwback Thursday we bring to you the story of Mariana, a young girl diagnosed with Pfeiffer…
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Throwback Thursday: Updates on Patients from Patient Worthy’s Past
Breaking Barriers: Florida Surgeon Performs Robotic Surgery 7,000 Miles from Patient
In a remarkable demonstration of medical innovation, a Florida-based surgeon recently performed a robotic surgery on a patient located over 7,000 miles away. This groundbreaking procedure highlights the immense potential…
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Breaking Barriers: Florida Surgeon Performs Robotic Surgery 7,000 Miles from Patient
Prodromal Period of Parkinson’s: Now the Scientists Have Some Answers
LA Jolla Institute (LJI) scientists have recently discovered that T-cells, known primarily as disease fighters, may also play a role in the development of Parkinson’s disease. The researchers, working in…
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Prodromal Period of Parkinson’s: Now the Scientists Have Some Answers
Dancing Through the Rain with Cancer
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Brittany Wilson, a stage 3A Melanoma, R-ISS stage 2 IgG Lambda Myeloma patient and…
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Dancing Through the Rain with Cancer
Cure Rare Disease Expands Leadership Team to Accelerate Treatments for Ultra-Rare Conditions
Cure Rare Disease (CRD), a pioneering nonprofit biotechnology organization, has announced the addition of new scientific and strategic leaders, marking a significant step forward in its mission to develop therapies…
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Cure Rare Disease Expands Leadership Team to Accelerate Treatments for Ultra-Rare Conditions
Clinical Trials Provide Hope for People Who Are Unable to Speak
Researchers at the University of California, Davis, have developed an investigational brain-computer interface (BCI) that holds promise for restoring the voices of people who have lost the ability to speak…
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Clinical Trials Provide Hope for People Who Are Unable to Speak
Understanding Prader-Willi Syndrome: Insights from the TREND Community (Part 3)
Go here to read Part 1 and Part 2 of this series provided by TREND Community about Prader-Willi Syndrome. TREND Community released a revealing report in November 2024 titled “Pulse…
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Understanding Prader-Willi Syndrome: Insights from the TREND Community (Part 3)
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
Defying the Odds: Shu Hua’s Inspiring Journey with ALS & MND
A recent article from Free Malaysia Today tells the remarkable story of Shu Hua, a woman who has not only surpassed a dire prognosis but continues to inspire others with…
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Defying the Odds: Shu Hua’s Inspiring Journey with ALS & MND
“Wait, How Do You Spell That?”: Amplifying Rare Disease Voices Through Podcasting
In the vast world of podcasts, “Wait, How Do You Spell That?” stands out as a beacon for patients, families, and advocates navigating the complex, often isolating journey of rare…
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“Wait, How Do You Spell That?”: Amplifying Rare Disease Voices Through Podcasting
Understanding the Social Impact of Rare Diseases: New Research Highlights Global Challenges
A new study published at ScienceDirect.com sheds light on the profound social challenges faced by individuals and families living with rare diseases. The article examines how rare diseases, while medically…
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Understanding the Social Impact of Rare Diseases: New Research Highlights Global Challenges
Army Soldier Triumphs Over Rare Disease with Life-Saving Lung Transplant in India
A recent report from the Times of India tells the inspiring story of a serving Indian Army soldier who overcame a critical health battle thanks to a successful lung transplant…
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Army Soldier Triumphs Over Rare Disease with Life-Saving Lung Transplant in India
Collaboration Drives Progress: Accelerating Innovation and Access in Rare Disease Treatments
A recent article from PMLiVE underscores the critical role of collaboration in advancing innovation and improving access to treatments for rare diseases. With over 7,000 rare diseases affecting millions of…
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Collaboration Drives Progress: Accelerating Innovation and Access in Rare Disease Treatments
Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
A recent article from The Economic Times spotlights the intriguing case of a young boy from South India who repeatedly fainted during baths—a perplexing pattern that led to the identification…
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Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
How Cristiano Ronaldo’s Discarded Armband Became a Lifesaver for a Child With a Rare Disease
A remarkable story shared by Sportskeeda illustrates how a moment of frustration on the football field turned into hope for a family in need. In March 2021, after a controversial…
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How Cristiano Ronaldo’s Discarded Armband Became a Lifesaver for a Child With a Rare Disease
The Strength of a Single Mother: Dominique’s Breast Cancer Story
Written When Diagnosed On January 15th, 2024 my life changed forever. I felt my right breast turn completely solid. I knew something wasn’t right, so I went to my doctor.…
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The Strength of a Single Mother: Dominique’s Breast Cancer Story
Rare Disease Biotech Achieves Key Milestone with Promising Therapy for FPL
A recent article from Pharmaceutical Manufacturer highlights a significant achievement in the rare disease sector, as Rare Disease Biotech announced reaching a major milestone in the development of its new…
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Rare Disease Biotech Achieves Key Milestone with Promising Therapy for FPL
Throwback Thursday: Updates on Patients from Patient Worthy’s Past
I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022, this article explores celebrates author…
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Throwback Thursday: Updates on Patients from Patient Worthy’s Past
New Mindsets for When Your Old Ones are Just Not Working for You
In October 2021, I was diagnosed with a rare, possibly life-threatening autoimmune disease called Myasthenia gravis. Some people said I had to “reinvent myself,” because indeed I could not, and…
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New Mindsets for When Your Old Ones are Just Not Working for You
New European Project Aims to Improve Rare Disease Diagnosis and Care: Insights from the RARE-Impact Initiative
A recent article published in the Orphanet Journal of Rare Diseases highlights the launch and goals of RARE-Impact, a new European project designed to enhance the diagnosis, care, and overall…
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New European Project Aims to Improve Rare Disease Diagnosis and Care: Insights from the RARE-Impact Initiative
A Case for Full Disclosure: Two Drugs, Two Women, Only One Survived
Sixty-five-year-old JoEllen Zembruski-Ruple had been a cancer patient at the revered Sloan Kettering center in January of this year. Her treatment for squamous cell carcinoma began with three chemotherapy pills.…
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A Case for Full Disclosure: Two Drugs, Two Women, Only One Survived
Understanding Prader-Willi Syndrome: Insights from the TREND Community (Part 2)
For Part 1 of this series provided to you by TREND Communities, please click here. On July 10, 2024, TREND Community released an impactful new report titled “Prader-Willi Syndrome: Perspectives…
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Understanding Prader-Willi Syndrome: Insights from the TREND Community (Part 2)
Joburg Woman Walks 35 Days to Cape Town, Raising Rare Disease Awareness for Her Husband
In an inspiring act of love and advocacy, Joburg resident Nthabiseng Mokoena has completed a remarkable 35-day walk from Johannesburg to Cape Town to raise awareness for a rare disease…
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Joburg Woman Walks 35 Days to Cape Town, Raising Rare Disease Awareness for Her Husband
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
