On January 5th the NFL announced it will be contributing just over $16 million to research. The money will be split among three different programs that focus on neurodegenerative diseases.…
As a wave of female empowerment cascades our nation - like the Time's Up and #MeToo movements - let's also turn our attention to Cervical Health Awareness Month. Cervical Health…
Midatech Pharma just received verbal confirmation from Polish regulators to conduct the first European in-human study for a treatment that could potential aid those with carcinoid cancer and acromegaly, reported…
According to a story from Syosset Jericho Tribune, the charity basketball fundraiser called Hoops for Harrison is back again this year. The tournament was named after Harrison Gillman, who now…
Although it never should have happened, at least the right course of action was taken! Reggie Bibbs of Houston, Texas was turned away from his Uber driver when he requested…
REGENXBIO announced last month that the Investigational New Drug application (IND) is active for a Phase I/II clinical trial of RGX-121 for the treatment of Mucopolysaccharidosis Type II (MPS II)…
At only six years old, Simeon Augustus Peterson, also referred to as "Mr. Pete," was diagnosed with Hansen's disease. From then on, he lived the rest of his life cut…
January 5th was not only a great day for the Butler basketball community, it was a dream come true for the bulldog fan Seth Dennison, reported Fox 59. The 7-year-old…
According to a story at medpagetoday.com, a recent study showed that stem cell transplant could be a viable new method for treating scleroderma, and could be more effective than previous…
RespireRx Pharmaceuticals announced last month it was cleared to resume its ampakine CX717 clinical trials to evaluate the drug’s efficacy in several central nervous system and respiratory disorders, including Pompe…
Last month, the FDA has granted Achillion Pharmaceuticals orphan drug designation to ACH-4471 for the treatment of patients with C3 Glomerulopathy (C3G). According to the FDA, the Orphan Drug Designation program provides…
New research is helping experts understand the underlying causes of idiopathic pulmonary fibrosis on the molecular scale. When solving any problem, disease included, it is best to start by understanding…
Nothing is worse for a family than hearing the word “cancer,” especially when it involves a child. The Tyson family was ready to start their perfect life eleven years ago.…
According to a story from the National Hemophilia Foundation, the Swedish pharmaceutical company Orphan Biovitrum announced that its first patient was registered for a new phase 4 clinical trial. The…
Another successful partnership in the rare disease community has come to fruition, reports The Pharma Letter. Just this past week, CureVac and Arcturus Therapeutics will become a powerhouse together with…
Happy Friday, Patient Worthians! This week we have articles about people working together on different types of rare disease teams. We have stories from a family who supports two children…
Patient Worthy is proud to announce we are participating in Patients as Partners EU in London, UK on January 23rd. Patients as Partners EU represents the only conference opportunity in Europe…
Margarita Matias could not believe her eyes when she walked into the newly renovated bathroom. Her old bathroom was far from ideal, and often leaked. The new arrangement is optimized…
According to an article from businesswire.com, the pharmaceutical company Odonate Therapeutics announced the beginning of CONTESSA, a phase three study of the treatment tesetaxel and its function in patients with…
Patients suffering from sickle cell disease, SCD, might just be getting news they've been waiting to hear for a long time. Just this week, the U.S. Food and Drug Administration…
At three months old, Emily's mouth hurt. Her first tooth started coming in. Her parents immediately knew that something was wrong. Three months later, the family received dire news about…
While it's general knowledge that working out is a huge plus for a healthy life, many questioned whether it was positive or dangerous to individuals with rare diseases. Yet, BMC…
According to a story from philly.com, many people with severe forms of brain cancer are not receiving sufficient hospice treatment, according to a recent assessment. The study took data from…
According to a story from financialbuzz.com, the pharmaceutical company AveXis, Inc., is planning to begin preparations to submit a Biologics License Application (BLA) to the Food and Drug Administration for…
According to a story from the Chicago Tribune, Ben Barres, a widely renowned neurobiologist and researcher, passed away at age sixty-three after fighting pancreatic cancer. Mr. Barres was credited with…
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