The National Institute of Arthritis, Musculoskeletal, and Skin Diseases awarded 6.5 million dollars to a team of researchers last month. The grant funding goes towards the creation of a new…
On January 30th, pop singer Jordin Sparks' step-sister Bryanna Jackson-Frias lost her battle with sickle cell anemia, reported People. Complications surfaced that sent her to the ICU. Jordin posted to…
My name is Amy, and I’m a 37 year old single mom of two beautiful girls, ages 8 and 13. I work full time as a business analyst for a…
Chloe Fernandez is an 11-year-old with primary ciliary dyskinesia, and that hasn't stopped her from being an advocate for the disease, reports Los Angeles Times. When given several amazing opportunities…
A new effort to raise awareness and funding for rare disease is underway. SMA News Today reported that NORD, the National Organization For Rare Disorders, organized this campaign to challenge…
England’s National Health Service has just approved a new drug for the treatment of breast cancer. While the drug is most effective in specific cases, advocacy group Breast Cancer Now…
According to a story from Cancer Updates, Research & Education, the Food and Drug Administration (FDA), recently approved the use of Trisenox injection in combination with tretinoin as a treatment…
In an episode CNN's webseries LoveStory, titled Love Accessibly - we follow Kristen as she looks for love in New York City as a woman in a wheelchair. With her…
According to a story from BioPortfolio, the pharmaceutical company Synspira announced the results of a study for poly-N glucosamine (PAAG) as a potential treatment for MRSA, a widespread antibiotic resistant…
Still getting over that crazy Super Bowl game?! If you're an Eagles or Patriots fan, you might need abit more time to gloat/recover - but for the rest of us,…
Welcome back, Patient Worthians! This week, we have an opportunity for Parkinson's patients, and an update on an Amyloidosis app. We also have two stories of teenagers whose lives suddenly…
There is new hope for patients and their families suffering from spinal muscular atrophy (SMA) reported AOL UK News. SMA is a physically debilitating and aggressive disease, and now a new…
"Ok, well first of all...I know nothing. But if your kids are anything like me, they're going to break a lot of toilets!" Those are the starting words writer and…
It is absolutely and unequivocally clear : “The PKU diet must include a medical product, usually consumed as a beverage. There are several brands available that are nutritionally suitable for…
Emma and Tripp Mattingly share the same infectious personalities of energy and happiness, but they also share the same rare genetic disease known as LPIN1, reports The Lebanon Enterprise. Living…
According to an article from Medical Xpress, doctors are starting to conduct CT scans of children's bones in order to better understand the origin of bone problems in long term…
New research shows that children can still inherit mitochondrial disease even if their mother never showed signs of the disease, reports ALN Magazine. It has been shown over time that…
There aren't many families like the Bradley's-- not just because they face the loss of their 10-year-old son who passed away recently due to brain cancer, but because of their…
Adam Murphy, a reporter for CBS46 learned of his mother's diagnosis of Progressive Supranuclear Palsy, PSP, in 2010 and decided to use his reporter platform to help her, originally reported…
In her recent story with Huffington Post, Allison Landa describes her experiences with congenital adrenal hyperplasia. Her article, self-titled as “My Life as a Former Bearded Lady,” details a lifetime…
The Patients as Partners EU Conference, put on by The Conference Forum, took place at the end of last month in London. A diverse group met to collaborate and discuss…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: Saturday, March 3rd, 2018 9:30am – 2:00pm Where: Embassy Suites Albuquerque Hotel & Spa 1000…
A recently published scientific letter in the Spanish medical journal, Endocrinología, Diabetes y Nutrición draws a link between the combined use of inhaled steroids and liver enzyme blockers and the development…
According to a story from Financial Buzz, the pharmaceutical company BriaCell announced some preliminary results for the ongoing clinical trials of its experimental treatment Bria-IMT. This treatment is an immunotherapy…
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