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Holidays with Dystonia
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
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Holidays with Dystonia
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Malignant Arrhythmias Impacting Athletes
According to a recent article, professional athletes have been forced into early retirement due to arrhythmias. Arrhythmias, which are potentially fatal, affect those who exercise too much at a higher…
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Malignant Arrhythmias Impacting Athletes
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NORD Webinar: Health Equity and Rare Disorders
On December 9, 2021, the National Organization for Rare Disorders (NORD) hosted a webinar program titled "Health Equity and Rare Disorders." This webinar was the first of a three-part series…
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NORD Webinar: Health Equity and Rare Disorders
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Doctors Repurpose DFMO for Bachmann-Bupp Syndrome
In 2016, Marley Berthold was born. But doctors, and her parents, noticed some concerning signs. Marley's silver hair had fallen out in clumps; she had macrocephaly (an abnormally large head)…
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Doctors Repurpose DFMO for Bachmann-Bupp Syndrome
AllStripes corporate lifestyle photo shoot at Salesforce park and AllStripes offices in San Francisco, Calif., Tuesday, Aug. 17, 2021.
Photo by Alison Yin/Alison Yin Photography
(Provided to PW by AllStripes)
AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 2)
Nancy Yu co-founded AllStripes with a vision in mind: to unlock more treatment options for those with rare diseases. In Part 1 of our interview, Patient Worthy sat down with…
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AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 2)
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AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 1)
For as long as she can remember, Nancy Yu has been entranced by the intersection of science and technology. In fact, as she describes it, she imagines a world in…
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AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 1)
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Being Aware of Your Eye Health
A recent article emphasized the importance of being educated about our eyes. As one of the most essential organs in the body, it’s important to know some key facts. Eye…
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Being Aware of Your Eye Health
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North Carolina Signs HB 736 to Support Newborn Screening
According to a news release from the EveryLife Foundation for Rare Diseases, North Carolina became the 4th state in the nation to sign newborn screening legislation in 2021 (following Arizona,…
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North Carolina Signs HB 736 to Support Newborn Screening
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Rare Disease Legislative Advocates November Webinar
On November 18, 2021, the Rare Disease Legislative Advocates (RDLA) held their monthly webinar. These webinars provide the rare disease community with updates regarding relevant legislation. As the year begins…
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Rare Disease Legislative Advocates November Webinar
Her First Spin Class Turned Into a Near Death Experience From Rhabdomyolysis
Kaelyn Franco was an experienced athlete by the time she entered college, and a friend recommended taking a spin class. According to an article in Yahoo, 23-year-old Kaelyn took her…
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Her First Spin Class Turned Into a Near Death Experience From Rhabdomyolysis
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A New Study by Tufts University Highlights the Lack of Diversity in Clinical Trials
According to a recent study by the investigative staff at Tufts University in Boston, Massachusetts, there is a direct correlation between the ethnicity or race of the site personnel and…
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A New Study by Tufts University Highlights the Lack of Diversity in Clinical Trials
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The BGTC is Working To Streamline The Development of Gene Therapies for Rare Diseases
The FDA, the NIH, 5 nonprofits, and 10 pharmaceutical companies, have formed an official partnership to accelerate gene therapy development for rare diseases. Out of 7,000 known rare diseases, just…
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The BGTC is Working To Streamline The Development of Gene Therapies for Rare Diseases
What are you thankful for this Thanksgiving?
Thanksgiving… A Promise Kept
Because it is Thanksgiving, the Patient Worthy team asked me to share my thoughts on gratitude. Some among us might think it would be a daunting assignment. After all, I have a…
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Thanksgiving… A Promise Kept
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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New Partnership Aims to Combat Inequities Faced by Rare Disease Patients of Color
The Rare Disease Diversity Coalition and Global Genes have recently established a new partnership. This partnership aims to help find solutions to help address outcome disparities faced by people of…
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New Partnership Aims to Combat Inequities Faced by Rare Disease Patients of Color
Compassion Corner: Clinical Trial Participants Give Doctors Lower Scores Based on Delivery of Unfavorable Diagnoses
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
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Compassion Corner: Clinical Trial Participants Give Doctors Lower Scores Based on Delivery of Unfavorable Diagnoses
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Metastatic NSCLC Survival Boosted by Dual Immunotherapy
According to a recent article, the overall survival of patients with untreated metastatic non-small cell lung cancer (NSCLC) were significantly improved by the addition of two immunotherapeutic drugs to…
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Metastatic NSCLC Survival Boosted by Dual Immunotherapy
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Science Simplified: What is Gene Therapy?
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: What is Gene Therapy?
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Study of the Week: The High Cost Burden of Rare Diseases
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
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Study of the Week: The High Cost Burden of Rare Diseases
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Disabled Journalists Have to Fight to Get into Newsrooms
In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the importance of accessibility in the…
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Disabled Journalists Have to Fight to Get into Newsrooms
Celebrating National Family Caregivers Month
November is officially recognized as National Family Caregivers Month, a time dedicated to recognizing and celebrating caregivers. The entire month is full of recognizing the effort and needs of caregivers,…
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Celebrating National Family Caregivers Month
FDA Grants Fasenra Orphan Drug and Fast Track Designations for EG and EGE
The FDA grants certain designations, such as the Orphan Drug (ODD) and Fast Track designations (FTD), to medications intended to treat rare and severe disorders. Recently, they granted both of…
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FDA Grants Fasenra Orphan Drug and Fast Track Designations for EG and EGE
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Studies Show a Rare Disease Diagnosis Comes with Tremendously High Health Care Costs
According to a recent article, patients diagnosed with a rare disease are faced with incredibly high health care costs compared to those without a rare disease. Impact of Rare Disease…
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Studies Show a Rare Disease Diagnosis Comes with Tremendously High Health Care Costs
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NORD Webinar: Diversity, Equity, Inclusion in Rare Disease Nonprofits
On October 27, 2021, the National Organization for Rare Disorders (NORD) hosted an informational webinar titled "Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profits." This webinar was the…
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NORD Webinar: Diversity, Equity, Inclusion in Rare Disease Nonprofits
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A Resource for Accessing Rare Disease Therapies Globally
Access Opportunities for Rare Disease Patients At present, there are around 7,000 identified rare diseases, with only 5% having treatments. That leaves more than 95% of rare disease patients with…
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A Resource for Accessing Rare Disease Therapies Globally
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