University of Glasgow scientists might have just come across an incredible new approach to providing patients with pharmaceutical medications on demand, reported first by International Business Times. This new technology…
Zaida was 3-years-old attending her normal yearly check-up with expectation that all was well, yet they quickly learned six days later of her terrifying cancer diagnosis, reports Daily Camera. Little…
Easton was born at thirty-six weeks gestation on January 6, 2017. He was almost immediately taken to the NICU for something called PPHN (Persistent Pulmomary Hypertension), Easton was intubated for…
February 14th is Valentine's Day! Make sure to treat your valentine to a special day - and while your at it, spread the word that February 14th is also National…
According to a story from Newswise, The University of Adelaide in Australia received a $1.19 million grant in order to spearhead an international research project. The project's aim is to…
There are fifty genetic diseases that can be characterized as lysosomal storage diseases (LSDs). Gaucher disease can be characterized as such. LSDs make up about one in every 8,000 births…
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…
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…
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…
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…
"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…
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…
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…
Earlier this year, Patient Worthy featured Ashley and her non-profit Love Not Lost – an organization that provides portrait sessions and photo albums for families dealing with a terminal illness…
Today, Professor Elsa Shapiro and Dr. Christina Lampe presented "Cognitive Impairment in Patients with MPS II: From Disease Burden to Cognitive Testing" at Satellite Symposium, an event sponsored by Shire…
According to a new study, people who suffer from rare disease are more prone to suffer from levels of anxiety, depression, pain and fatigue. The findings are proof that special…
According to a post from the National Organization of Rare Disorders, the organization has joined thirty-seven other patient and provider groups and organizations in opposition to the "Right to Try"…
A recent study from Michigan State University confirms that mice do indeed have significant similarities to humans which is beneficial for cancer research, reported News Wise. This has been in…
When someone is diagnosed with a rare disease, or one that has no cure, it is not uncommon for the person to begin to have mental health challenges as well.…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
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