FH Summit 2019 Highlights
The 2019 FH Summit was a productive and moving event that brought patients and researchers together from all over the world. Katherine A. Wilemon, founder and CEO of the FH…
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FH Summit 2019 Highlights
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Study Reveals a Key Difference Between People of Color with Multiple Sclerosis and Whites
According to a story from Multiple Sclerosis News Today, a recent study has revealed a never-before-seen difference in multiple sclerosis patients of different racial backgrounds. The research found that people…
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Study Reveals a Key Difference Between People of Color with Multiple Sclerosis and Whites
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Muscular Dystrophy Association’s Pompe Disease Patient Focused Drug Development Meeting Cleared by FDA
According to a story from tradeshownews.vporoom.com, the Muscular Dystrophy Association (MDA) has recently announced the official approval of its Patient-Focused Drug Development (PFDD) meeting by the US Food and Drug…
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Muscular Dystrophy Association’s Pompe Disease Patient Focused Drug Development Meeting Cleared by FDA
Continued Positive Results for Amyotrophic Lateral Sclerosis Phase 1/2 Trial
An amendment is being planned for an ongoing Phase 1/2 clinical trial for amyotrophic lateral sclerosis (ALS). This intention has just been announced by the cell therapy company Kadimastem. However,…
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Continued Positive Results for Amyotrophic Lateral Sclerosis Phase 1/2 Trial
The Importance of Emotional Support for Children with Chronic Illnesses
It wasn’t until the 1980s that the medical field really started talking about the need to emotionally support patients, especially those with chronic illnesses. This is partly due to the…
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The Importance of Emotional Support for Children with Chronic Illnesses
How to Support a Friend or Family Member Dealing with a Rare Disease Diagnosis
I have been writing for this website for a little over 2 years. Neatly collecting, reading, and reporting on stories of people with rare conditions and disabilities. Little did I…
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How to Support a Friend or Family Member Dealing with a Rare Disease Diagnosis
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The FDA Approves New Treatment for Chronic Lymphocytic Leukemia Under an International Program
According to a story from PR Newswire, the US Food and Drug Administration (FDA) has recently granted supplemental approval to the drug acalabrutinib (marketed as Calquence) as a treatment for…
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The FDA Approves New Treatment for Chronic Lymphocytic Leukemia Under an International Program
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“We Don’t Know Anything:” a Mitochondrial Encephalomyopathy Story From the Czech Republic
When Lucinka was born, it seemed like everything was all right. But it wasn’t. Lucinka wasn’t doing well, and a whirlwind of examinations began. First, a diagnosis couldn’t be made.…
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“We Don’t Know Anything:” a Mitochondrial Encephalomyopathy Story From the Czech Republic
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Researchers are Gaining a Better Understanding of Disease Development at the Cellular Level
The University of Southern California (USC) recently published an article in USC News announcing that researchers have discovered a technique allowing them to untangle the coiled, spiraling DNA molecules.…
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Researchers are Gaining a Better Understanding of Disease Development at the Cellular Level
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New Study Sheds Light on Racial Difference in Scleroderma Progression
It is already known that gender plays a role in systemic sclerosis disease with scleroderma – it’s about four times as prevalent in women than men - but a…
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New Study Sheds Light on Racial Difference in Scleroderma Progression
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Her Baby’s SLC6A1 Genetic Disorder is Currently Untreatable, But Amber Freed is Committed to Finding a Cure
Amber’s determination to find a miracle for her son Maxwell is detailed in a recent BuzzFeed article. Maxwell and his twin sister, Riley, were born in March 2017. For…
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Her Baby’s SLC6A1 Genetic Disorder is Currently Untreatable, But Amber Freed is Committed to Finding a Cure
Study: New Treatment to Help with Daytime Sleepiness from Narcolepsy
Narcolepsy is characterized by drowsiness, often during the daytime. This is a symptom that greatly affects the lives of those with narcolepsy, and for a long time no FDA…
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Study: New Treatment to Help with Daytime Sleepiness from Narcolepsy
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Preliminary Findings From Spinal Muscular Atrophy Trial Recently Announced
According to a story from gurufocus.com, the biopharmaceutical company Scholar Rock has recently announced the release of preliminary results from a phase 2 clinical trial. This clinical trial is testing…
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Preliminary Findings From Spinal Muscular Atrophy Trial Recently Announced
Editor’s Choice: Surviving and Celebrating Thanksgiving
Happy Thanksgiving week! This week we're doing a special edition of Editor's Choice. Instead of choosing four article from the past week, we're bringing back four articles about celebrating and…
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Editor’s Choice: Surviving and Celebrating Thanksgiving
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Dr. Marc Bonaca Presents Insight Into Future Trends for Cardiovascular Disease and the Need For Teamwork
Dr. Marc Bonaca, a cardiologist with the Brigham and Women's Hospital in Boston, recently gave a presentation at the Las Vegas 2019 VIVA conference on trends in vascular disease. As reported in…
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Dr. Marc Bonaca Presents Insight Into Future Trends for Cardiovascular Disease and the Need For Teamwork
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An Oklahoma Medical Research Foundation Scientist Played a Critical Role in Developing a New Sickle Cell Disease Treatment
According to a story from The Oklahoman, Dr. Roger McEver, who is a scientist and the Vice President of Research at the Oklahoma Medical Research Foundation (OMRF), played a pioneering…
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An Oklahoma Medical Research Foundation Scientist Played a Critical Role in Developing a New Sickle Cell Disease Treatment
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Gastroparesis Symptoms Significantly Improved via Gastric Electrical Stimulation
Gastric electrical stimulation (GES) has long been suggested as a treatment for symptoms of gastroparesis, but the use of the technique has been deemed controversial. A recent study published…
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Gastroparesis Symptoms Significantly Improved via Gastric Electrical Stimulation
Doctors who helped develop heart drug now balk at $225,000-a-year price
Wearing a revolutionary-era tricorn hat, doctor Mathew Maurer stood at a lectern in front of an audience of fellow cardiologists in Philadelphia, decrying the price of a new medication that…
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Doctors who helped develop heart drug now balk at $225,000-a-year price
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Study: Viking Therapeutics Evaluates VK2809 for Treatment of Non-Alcoholic Steatohepatitis (NASH)
The FDA has recently approved of Viking Therapeutics' Investigational New Drug (IND) application, which allows patients to enroll in their clinical trials. In order to qualify for these trials,…
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Study: Viking Therapeutics Evaluates VK2809 for Treatment of Non-Alcoholic Steatohepatitis (NASH)
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New Treatment Shows Benefits for Patients with Sickle Cell Disease and Beta Thalassemia
New knowledge of the genes that affect sickle cell disease and beta thalassemia has allowed for advances in treatments for these diseases. Advances in technology have also helped with…
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New Treatment Shows Benefits for Patients with Sickle Cell Disease and Beta Thalassemia
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London’s New “Death Plan” Entails End-Of-Life Wishes For Those With Terminal Illnesses
When you know your days are numbered, you might stop to think how you want to spend those last days. At times, medical emergencies can put patients into conditions or…
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London’s New “Death Plan” Entails End-Of-Life Wishes For Those With Terminal Illnesses
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A Father is Asking for Worldwide Birthday Cards for His Seven-Year-Old Daughter Lyla Who Is Scheduled for her 10th Brain Operation
An article in the Hartlepool Mail announced that Lyla O’Donovan, her parents, and her four brothers and sisters will be celebrating Lyla’s seventh birthday on November 28th, 2019 at…
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A Father is Asking for Worldwide Birthday Cards for His Seven-Year-Old Daughter Lyla Who Is Scheduled for her 10th Brain Operation
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The Drug Tofacitinib Appears Effective for Juvenile Idiopathic Arthritis in Clinical Trial
According to a story from Juvenile Arthritis News, the results of a recent phase 3 clinical trial indicate that the drug tofacitinib (marketed as Xeljanz) can be an effective treatment…
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The Drug Tofacitinib Appears Effective for Juvenile Idiopathic Arthritis in Clinical Trial
Get Vaccinated to Protect Yourself and Children with Severe Combined Immunodeficiency
The Bettuchi's Amanda Bettuchi and her husband have 3 children. Their middle child, Shane, was born with severe combined immunodeficiency (SCID). Essentially, this means he was born with practically no…
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Get Vaccinated to Protect Yourself and Children with Severe Combined Immunodeficiency
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New Guidelines for Vasculitis Treatment Recommend First-Line Biologics for Some Patients
According to a story from Healio, new guidelines for the treatment of different forms of vasculitis recommend the use of biologic therapies as a first-line option for certain patients. It…
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New Guidelines for Vasculitis Treatment Recommend First-Line Biologics for Some Patients
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