2-year data confirm benefit of nivolumab regimen for advanced gastric, esophageal cancers
nivolumab Read the source article at healio.com
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2-year data confirm benefit of nivolumab regimen for advanced gastric, esophageal cancers
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10 Cases of Legionnaires’ Disease Have Been Reported in NY
Health officials in Long Island, New York are investigating ten reported cases of Legionnaires' disease, which is a severe form of pneumonia. While medical teams are searching the area for…
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10 Cases of Legionnaires’ Disease Have Been Reported in NY
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Compassion Corner: Technology Cannot Replace the Gentle Words Spoken by a Nurse or Doctor When a Patient is in Excruciating Pain
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: Technology Cannot Replace the Gentle Words Spoken by a Nurse or Doctor When a Patient is in Excruciating Pain
Many with Rare Diseases Know the Value of First Responders
Throughout my daughter Kelley’s 45-year life with a rare disease, there were numerous times that we needed to either call 911 or take her to the Emergency Department at a…
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Many with Rare Diseases Know the Value of First Responders
Ride for Their Lives: Biking to Fight Against Climate Change
Climate change is an issue that has seen a lot of activism from the younger generations, as they will have to grow up and handle more of the burdens it…
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Ride for Their Lives: Biking to Fight Against Climate Change
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RDLA Virtual Rare Disease Congressional Caucus Briefing: The Future of Newborn Screening
On October 25, 2021, Rare Disease Legislative Advocates (RDLA) held a virtual briefing for the Rare Disease Congressional Caucus. The subject of this briefing was newborn screening and ongoing discussions…
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RDLA Virtual Rare Disease Congressional Caucus Briefing: The Future of Newborn Screening
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RARESummit21: Rare Equity
On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…
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RARESummit21: Rare Equity
Takeda and Immusoft To Work Together to Develop Treatments for Neurometabolic Disorders
Collaboration can be extremely important when it comes to developing treatments, especially for rare disorders. Sharing information, technology, and expertise can lead to therapies that otherwise might not have seen…
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Takeda and Immusoft To Work Together to Develop Treatments for Neurometabolic Disorders
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Oct. 29: Join Uplifting Athletes Ambassador Marni Cartelli for Press4Hope
Every game, the men of Northwestern Football leave the tunnel to a sign with an important reminder: “trust yourself.” Each player touches that sign before they head to the field,…
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Oct. 29: Join Uplifting Athletes Ambassador Marni Cartelli for Press4Hope
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South African Rare Disease Advocates Aim to Establish a National Rare Disease Policy
Rare Diseases South Africa (RDSA) and The Rare Diseases Access Initiative (RDAI) have recently come together to talk about the issues that those living with rare diseases in South Africa…
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South African Rare Disease Advocates Aim to Establish a National Rare Disease Policy
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This Social Worker is Transforming the Lives of Rare Disease Patients
Maya Doyle is a health social worker specifically focused in pediatrics and the transition from pediatric care to adult care. She has been practicing for twenty years. Now, she works…
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This Social Worker is Transforming the Lives of Rare Disease Patients
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Compassion Corner: When Families are Involved with the Care of Their Critically-Ill Loved Ones
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: When Families are Involved with the Care of Their Critically-Ill Loved Ones
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New Collaboration to Advance Health Equity for Rare Disease Patients
A new partnership has been formed between Global Genes and the Rare Disease Diversity Coalition (RDDC) - created by the Black Women's Health Imperative - in an effort to increase…
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New Collaboration to Advance Health Equity for Rare Disease Patients
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A Walk to Raise Awareness for Okur-Chung Neurodevelopmental Syndrome
A lack of awareness is a problem that many rare diseases face. Small patient populations, limited research, and other factors all play a role in this issue. Luckily, there are…
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A Walk to Raise Awareness for Okur-Chung Neurodevelopmental Syndrome
Mexico is Creating a National Registry of Rare Diseases
The very first National Census of Patients with Rare Diseases in Mexico began October first of 2021 by the General Health Council (CSG). This census will last until January 15th…
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Mexico is Creating a National Registry of Rare Diseases
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NORD Rare Summit: The Future of Gene Therapy in Treating Rare Disease
The National Organization for Rare Disorders (NORD) held its virtual Rare Diseases and Orphan Products Breakthrough Summit on October 18-19, 2021. Patient Worthy was able to sit in on some…
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NORD Rare Summit: The Future of Gene Therapy in Treating Rare Disease
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Ninety Percent of Rare Diseases Do Not Have an Approved FDA Treatment
Dr. Ed Neilan, who is the Chief Medical and Scientific Officer of the National Organization for Rare Disorders (NORD), recently commented that there are approximately more than seven thousand…
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Ninety Percent of Rare Diseases Do Not Have an Approved FDA Treatment
Is technology the key to accelerating rare disease clinical trials? – MedCity News
Technology can assist sponsors in setting up trials and activating clinical trial sites quickly. But tech will only play a small role within the larger movement toward accelerated approval. Read…
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Is technology the key to accelerating rare disease clinical trials? – MedCity News
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The Secret Sauce for Bringing Innovative Therapies to Patients with Rare Diseases Faster
Written by Lori Lawter, MPH We’ve heard a lot about bringing drugs to market lately, especially in light of the COVID-19 vaccine. You might wonder, “Is there a ‘secret sauce’…
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The Secret Sauce for Bringing Innovative Therapies to Patients with Rare Diseases Faster
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Indian Government to Place Regulative Measures on Crowdfunding for Rare Diseases
Rare disease therapies are often difficult to access, whether that is due to price, a patient's location, or another factor. Because of these obstacles, many rare disease patients find themselves…
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Indian Government to Place Regulative Measures on Crowdfunding for Rare Diseases
Compassion Corner: The Door Swings Both Ways
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: The Door Swings Both Ways
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Introducing the Newest Patient Worthy Partners
Patient Worthy makes a point to develop relationships with advocacy groups focused on rare diseases in order to help spread awareness, highlight patient experiences, and bring attention to community events.…
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Introducing the Newest Patient Worthy Partners
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New Genetic Disorder – Zaki Syndrome – Discovered
With each new day and technological improvements come new discoveries about the world around us. Some of those discoveries center around medical conditions which have never been seen before. According…
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New Genetic Disorder – Zaki Syndrome – Discovered
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Children’s Books Help Explain Rare Diseases Like aHUS
Explaining something as complicated as a rare disease to a child can be difficult. That's why Alexion Pharmaceuticals created a books series titled "Inspired By." The series is a way…
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Children’s Books Help Explain Rare Diseases Like aHUS
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Improving Rare Disease Clinical Trials
Clinical trials face many obstacles regardless of which disease they aim to investigate. However, rare disease trials face additional problems that don't typically impact studies for more common conditions. Small…
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Improving Rare Disease Clinical Trials
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