Controversial Alzheimer’s drug exits the stage
Controversial Alzheimer's drug comes off the market (axios.com)
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Controversial Alzheimer’s drug exits the stage
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Study: Private Equity-Owned Hospitals Less Safe for Patients
According to an article published in Healthcare Dive, a recent study published in the academic journal JAMA indicated that patients receiving treatment in hospitals owned by private equity firms were at an…
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Study: Private Equity-Owned Hospitals Less Safe for Patients
Rare Disease Day: Share Your Stripes with Patient Worthy!
Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…
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Rare Disease Day: Share Your Stripes with Patient Worthy!
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Study Suggests that Perinatal Depression Risk is Significantly Higher in Women with Autoimmune Diseases
Type 1 diabetes (T1D), rheumatoid arthritis, lupus, and ulcerative colitis are all examples of autoimmune diseases. An autoimmune disease is a condition that occurs when the immune system mistakenly attacks…
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Study Suggests that Perinatal Depression Risk is Significantly Higher in Women with Autoimmune Diseases
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Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
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Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space
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CharlieFest on March 9: An Event to Raise Ring Chromosome 14 Syndrome Awareness
Ring chromosome 14 syndrome is an extremely rare chromosomal disorder that was first described in medical literature in 1971. An estimated 40-80 cases have since been discovered and described. So…
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CharlieFest on March 9: An Event to Raise Ring Chromosome 14 Syndrome Awareness
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RDLA Webinar: Rare Disease Policy Priorities for 2024
On January 18, 2024, 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: Rare Disease Policy Priorities for 2024
The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through
Acknowledgment: This story is sponsored by Kite, a Gilead Company and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through
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RDLA Caucus Briefing: Patient Experiences Driving Current Legislation
On December 5, 2023, the Rare Disease Legislative Advocates (RDLA) held an RDLA Caucus briefing. This briefing, held in collaboration with the Rare Disease Congressional Caucus, provided an update on…
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RDLA Caucus Briefing: Patient Experiences Driving Current Legislation
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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
Photo courtesy of Uplifting Athletes
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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