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Shattered
Written by Dr. Donna Nicholson Content Warning: Suicide, Self-harm In the summer of 1990, I learned that your life can change in the twinkling of an eye. Mine did…
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Shattered
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A Simple Story About Our Complex Immune System
Many helpful guides cover immunology which is the study of the immune system and how the body defends itself against disease. The immune system is comprised of cells, organs, small…
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A Simple Story About Our Complex Immune System
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The Telemedicine Revolution: Reshaping Primary Healthcare for Better or Worse?
The increasing penetration of digital technologies and the ubiquity of smartphones and the internet have transformed several spheres of our lives. Healthcare is no exception. With technological advances, it has…
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The Telemedicine Revolution: Reshaping Primary Healthcare for Better or Worse?
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The NFL’s My Cause My Cleats 2023: Lacing Up for Awareness with Players’ Personal Stories
During the NFL’s My Cause My Cleats initiative, passion and purpose collide on the field. This initiative embodies the profound bond between athletes and the causes that matter to…
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The NFL’s My Cause My Cleats 2023: Lacing Up for Awareness with Players’ Personal Stories
Holidays with a Chronic Illness
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
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Holidays with a Chronic Illness
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Stepping Up for Rare Disease: NFL Players Support Uplifting Athletes for My Cause My Cleats Initiative
In the world of professional sports, where grit, resilience, and determination reign supreme, an unexpected intersection emerges: the realm of rare disease. While rare diseases and sports are often perceived…
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Stepping Up for Rare Disease: NFL Players Support Uplifting Athletes for My Cause My Cleats Initiative
Whole Genome Sequencing May Have Saved This Baby’s Life
Two emergency surgeries that began 48 hours after birth, meningitis, and over a month in the intensive care units of three Seattle hospitals prompted Layla Babayev’s desperate parents to enroll…
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Whole Genome Sequencing May Have Saved This Baby’s Life
Experts Are Comparing the Threat of Bacterial Antimicrobial Resistance (AMR) to the HIV/AIDS Health Crisis
445 words 10% matched vs. 2061 words 2% matched We invented medicines to kill bacteria; now, the bacteria are killing us. Lucien Swetschinski, a researcher and co-author at IHME, told…
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Experts Are Comparing the Threat of Bacterial Antimicrobial Resistance (AMR) to the HIV/AIDS Health Crisis
An Overview of My Time at the NORD October 2023 Breakthrough Summit
This year, the National Organization for Rare Disorders (NORD) held its annual Breakthrough Summit from October 16-17 in Washington, D.C. During the Breakthrough Summit, NORD celebrated its 40th anniversary and…
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An Overview of My Time at the NORD October 2023 Breakthrough Summit
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Can CAR-T Cell Therapies Increase the Risk of Developing New Blood Cancers?
Treating cancer can be challenging. While there are many different potential therapeutic options designed for people with cancer, these treatments are not always effective. Chimeric antigen receptor (CAR) T cell…
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Can CAR-T Cell Therapies Increase the Risk of Developing New Blood Cancers?
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Using AI Software to Support Clinical Decisions in Cancer Treatment
The goal of providing precision techniques to cancer care is becoming increasingly complicated. According to a recent article in Inside Precision Medicine, the cause may be attributed to the…
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Using AI Software to Support Clinical Decisions in Cancer Treatment
How to line your stomach in time for Thanksgiving
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How to Protect Your Stomach This Thanksgiving
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
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How to Protect Your Stomach This Thanksgiving
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Nanocapsules Enhance Immune Response Against Cancer Tumors
Cancer immunotherapy has transformed the landscape of cancer treatment, revealing that not all patients with solid tumors respond effectively to this approach. As reported by News Medical Life Sciences,…
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Nanocapsules Enhance Immune Response Against Cancer Tumors
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Scientists Find Biomarker for Predicting Neuron Repair, with Implications for Future Therapies
An individual has a good chance of recovering from an injury to his or her legs or arms, but it is not always the case when the injury involves…
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Scientists Find Biomarker for Predicting Neuron Repair, with Implications for Future Therapies
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Wave Life Science’s New Trial Application is Causing Renewed Excitement Around RNA Editing
If Wave Life Sciences’ recently submitted trial application for WVE-006 is approved, it will become the first RNA editing treatment in a clinical development setting. Wave’s CEO, Paul Bolno,…
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Wave Life Science’s New Trial Application is Causing Renewed Excitement Around RNA Editing
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RDLA Webinar: The Inflation Reduction Act and a Ruling on Copay Accumulators
On October 24, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
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RDLA Webinar: The Inflation Reduction Act and a Ruling on Copay Accumulators
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Scientists Are Calling Monkey’s Two-Year Survival After a Pig Kidney Transplant “Unprecedented”
The xenotransplant involved transplanting Yucatan miniature pig kidneys into macaque monkeys with 69 genetic modifications. One monkey survived for over two years, offering hope to the team of Harvard…
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Scientists Are Calling Monkey’s Two-Year Survival After a Pig Kidney Transplant “Unprecedented”
Sniffing Out Prostate Cancer: How Dogs’ Olfactory Sense Can Train Neural Networks
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…
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Sniffing Out Prostate Cancer: How Dogs’ Olfactory Sense Can Train Neural Networks
The History of Post-Traumatic Stress Disorder
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…
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The History of Post-Traumatic Stress Disorder
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Surviving Mouth and Neck Cancer
Two days before Thanksgiving in 2022, I was diagnosed with mouth and neck cancer. I had my first surgery in my mouth to remove the mass on December 20, 2022.…
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Surviving Mouth and Neck Cancer
Newborn Screening Saves Lives and Lowers Costs
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…
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Newborn Screening Saves Lives and Lowers Costs
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Science Simplified: Blood-Brain Barrier Part 2
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
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Science Simplified: Blood-Brain Barrier Part 2
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Opinion: Effort to Lower Drug Costs Could Hurt Other Patients
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…
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Opinion: Effort to Lower Drug Costs Could Hurt Other Patients
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Global Genes RARE Advocacy Summit 2023: Fostering Community and Support in Rare Disease
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…
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Global Genes RARE Advocacy Summit 2023: Fostering Community and Support in Rare Disease
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A Visual Tip to Slow Down and Not Over Do it and Hurt Yourself More
If you have read my books, seen my blogs, or watched my videos, you know that I live with a neurological movement disorder called dystonia, which I've had since 2001.…
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A Visual Tip to Slow Down and Not Over Do it and Hurt Yourself More
