For so many in the rare disease community, courage isn't a just a virtue - it's a necessity. Many have to overcome odds and obstacles that most others don't have…
According to a story from curetoday.com, a recent study indicated that many patients with uveal melanoma reported having unmet psychological and informational needs, particularly in the first several months after…
The average American might not be interested in walking two miles every day. However, for Patricia Coleman, it is an activity in which she proudly partakes! In honor of Sarcoidosis…
Ashley Moore survived cancer. For many people, that’s enough. Moore, however, chose to give back in a surprisingly direct and immediate way. She decided to become a nurse. Keep reading…
We hope that everybody is having a great Easter, Passover, or first taste of spring! This week we have a story about sisters with Batten disease who are finally being…
As we close out the month of March - it's important to give a little thought to some of the lesser-known rare diseases that are often overlooked. Bleeding disorders is…
According to a story from cancercompass.com, a recent study has demonstrated that income level is a significant factor in determining survival for patients with anal cancer. In general, the study…
According to a story from GlobeNewswire, the biotechnology company argenx announced recently that its investigational therapy ARGX-113 was granted orphan drug status by the European Commission. This designation is based…
According to an article from the Augusta Free Press, a research team from Vanderbilt University and the Virginia Tech Carilion Research Institute has successfully managed to uncover the manner in…
According to a story from mysunshinecoast.com.au, an international research team has uncovered a potential biomarker that could help develop treatments for multiple myeloma, a rare form of cancer. Currently, multiple…
According to a story from the Nottingham Post, the family members of brain cancer patients are putting their time and money towards the funding of a cutting edge MRI scanner…
According to a story from ibdnewstoday.com, a recent study from Italy suggests that people with severe cases of inflammatory bowel disease are more likely to develop non-alcoholic fatty liver disease.…
Michael Mullan was only a baby when he was diagnosed with cancer for the first time-- specifically neuroblastoma, a childhood cancer which had a low survival rate. Since then, he…
One of Patient Worthy’s partners, The MDS Foundation, will be hosting another FREE event! Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event…
A recently published study examines the response of motor nerve cells to motor neuron disease. Researchers hope that by more completely understanding this cellular response that they may be able…
According to a story from Everyday Health, The U.S. Food and Drug Administration (FDA), has recently approved a new drug for the treatment of recently diagnosed patients with Hodgkin disease.…
According to a story from GlobeNewswire, The pharmaceutical company AveXis, Inc., a company that specializes in the development of gene therapies, recently announced that its candidate AVXS-101 was awarded SAKIGAKE…
According to a story from Innovation Toronto, a recent study has helped develop methods that could be used to create cell-based, personalized immunotherapy treatments that could be used to treat…
According to a story from healio.com, scientists have developed an easy to use testing method for Barrett's esophagus, which can be a precursor to esophageal cancer. The new device combines…
Following Rare Disease Day at the NIH Clinical Center in early March, we spoke to the NIH about remaining questions we had pertaining to rare disease research. We are impressed with…
In the beginning of March, Patient Worthy joined many other groups from the rare disease community for Rare Disease Day at the NIH Clinical Center, an event which you can…
According to a story from news-medical.net, the Genomics England company, which was founded as a subsidiary of the UK's Department of Health and Social Care in 2013, announced recently that…
Sisters Nicole and Jessica Rich, both diagnosed with Batten disease, will finally be able to receive treatment at Great Ormond Street Hospital in London. Nicole, who is six years old,…
According to a story from Financial Content, the drug company Arena Pharmaceuticals recently announced that its data results from Phase II clinical trials has been positive. The trial in question…
March is not just multiple myeloma awareness month... ...it is multiple myeloma ACTION month! Multiple myeloma is a form of cancer that develops in a type of white blood cell…
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