1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
In 2017, a group called “Traveling CVS Warrior” was created on Facebook. This is a group I created that sends a stuffed animal aka a Cyclic Vomiting Syndrome (CVS) Warrior to…
In a study conducted by Ph.D Ludwine Messiaen, the professor of genetics at the University of Alabama at Birmingham, says that there has been progress made to help aid those…
According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to her diagnosis. Her constant pain, which…
We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…
According to a story from Mirror, the advocacy group Patient Concern is calling out the UK's National Health Service (NHS) for failing to treat cancer patients appropriately. The claims are…
According to a story from abc.net.au, ever since Massimo Damiani was first diagnosed with a leukodystrophy, his parents, Sally and Stephen, have been committed to promoting research efforts and new…
According to a story from pm360online.com, the clinical stage corporation Epizyme recently released detailed results from the Phase 2 trial of its leading investigational candidate, tazemetostat. This drug is in…
The information in this article is based on the HAE UK and the US Hereditary Angioedema Association websites. Hereditary angioedema (HAE) is a condition that affects about one in every…
The Investigational New Drug Application for the experimental drug CTX001 for treating sickle cell disease has been put on clinical hold, announced Vertex Pharmaceuticals Incorporated and CRISPR Therapeutics. This hold…
Pfizer has announced that the medicine Xalkori (crizotinib) has received Breakthrough Therapy designation from the U.S. Food and Drug Administration (FDA) for two potential treatment uses. The full article can be…
According to a story from msn.com, a significant portion of woman may notice a small number of hairs growing on their chin at some point in their lives. In most…
A study has discovered a mechanism involved in amyotrophic lateral sclerosis (ALS). The researchers hope that this new information could contribute to finding a treatment for the condition. The full…
According to a story from empr.com, a recent study revealed that gene therapy could allow patients with beta thalessemia to stop having to get regular blood transfusions. The gene therapy…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
Patient Worthy is proud to announce some new features to our website! Thanks to your valuable feedback, we have now enabled the personalization of your homepage to emphasize the news…
According to a story from Reuters, the cancer drug developer Loxo Oncology recently released the latest results from the trial testing its investigational therapy LOXO-292. Preliminary results released about a…
A recent study by researchers in the US has linked Lynch syndrome to several more forms of cancer. Previously, Lynch syndrome has mainly been associated with colorectal and endometrial cancers,…
The results of a Phase 1 clinical trial of the experimental drug ivosidenib, led by researchers at The University of Texas MD Anderson Cancer Center, have been published in the…
Researchers from the University Hospital Bonn in Berlin, Germany have successfully used artificial intelligence image scanning to diagnose patients with Glycolipid (GPI) anchor deficiencies, reports Healthcare Analytics News. They recently published…
Cancer treatment is most successful when the cancer can be detected early. The earlier the better. According to Newsweek, a new screening test may be able to detect cancer faster…
Early trial results in the United Kingdom point to a new vaccine which may extend the lives of cancer patients. The vaccine, designed to help treat glioblastoma, is being described…
A primary immunodeficiency report, published in the journal Clinical and Experimental Immunology, examines medical care for primary immunodeficiency patients in the UK. The publication of the report coincides with the…
The biopharmaceutical company Complexa, Inc., has announced that the first patient has been dosed on the Phase 2 clinical trial FIRSTx. FIRSTx is a study of the experimental drug CXA-10…
Loxo Oncology has announced that the US Food and Drug Administration (FDA) has granted the drug larotrectinib Priority Review, and accepted a New Drug Application (NDA) for it. These applications…
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