According to Juvenile Arthritis News, treating juvenile idiopathic arthritis early helps reduce symptoms, nearly "inactivating" the condition. The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) JIA Registry found that early…
Kristie DeMarco was an extreme athlete- constantly training for triathlons, ironman races, ice swimming, and open water swimming. She loved to compete in various feats of strength and endurance. Overall,…
A recent study published in Blood Cancer Journal has established a new method for effectively predicting survival outcomes for patients with low-risk myelodysplastic syndromes (MDS). The method is known as the…
May 16th is celebrated annually as Hereditary Angioedema (HAE) Awareness Day. The event was established with the goal of spreading awareness about this rare condition among both the general public…
May 16th is recognized as World Congenital Disorders of Glycosylation (CDG) Day. First launched in 2016 by the Portuguese Association for CDG with support from a variety of CDG patient…
By Natalie Homan from In The Cloud Copy In the United States, about 14% of students receive special education services. This means that around 7 million children and teens have…
Normally the immune system will go on the attack against a foreign invader such as a germ and then return to standby mode. But according to a report in…
Brooke Ramirez's pregnancy with her first daughter went as planned, and her new baby Trinity passed her developmental milestones. It wasn't until she was five months old that they noticed…
Maxwell and Riley Freed are twins who just celebrated their third birthday. Maxwell has a rare disease called SLC6A1. Sadly, this was a notable birthday because at 3, Maxwell will…
New information, speculation, statistics, and predictions about COVID-19 are hitting the internet every day. Yet neurologists are attempting to answer their patients’ questions without having sufficient data that would…
According to a recent report by CNN, the UK Health Service sent an alert to general practitioners warning of a rise in the last three weeks of children who…
Cytokine storms have been prominent in the news lately due to their role in COVID-19, but researchers have been studying their connection to Castleman disease for a long time. In…
May 15th is recognized each year as Mucopolysaccharidosis (MPS) Awareness Day. The goal of this day is to help spread awareness about this group of diseases among the general public…
The European Commission has just granted their approval to Pharming for an extended indication of RUCONEST (conestat alfa) for Hereditary Angioedema (HAE). This extension allows the therapy to be utilized for…
It's official: May is Cystic Fibrosis Awareness Month! So myself, and the Patient Worthy team, are excited to bring you some stories to help build your awareness and increase patient…
It all began with an email in 2019. Matt Might, director of the Hugh Kaul Precision Medicine Institute, shot his thoughts over to neurosurgery resident Matt Davis, whose 3-year-old son…
A recent article in Biospace reported an 83% survival rate for COVID-19 patients after two infusions of the experimental drug Ryoncil, developed by Mesoblast Ltd. The patients who were…
According to Batten Disease News, Invitae and Axovant Gene Therapies partnered up to offer free genetic testing in North America. This will focus on children who are thought to…
By Jodee Redmond from In the Cloud Copy Thermo Fisher Scientific, a world leader in the life sciences community, has announced that it has developed a new test for Gaucher…
Happy Thursday! The week is almost over! One more day to go! To get you through this final bit, we have three stories that we think demonstrate different aspects of…
As sourced from the Washington Post, COVID-19 coverage has been spreading the news: people with many disabilities are scared, and we need to take care of them. For many, the…
A New Study A new study, conducted by CLS Behring, has found that a new method of administration for Hizentra as a treatment for primary immunodeficiency (PI), could improve quality…
Minorities and Healthcare As a whole, racial minorities, particularly black and Latino people, have more health comorbidities. This is due to a wide array of factors including structural elements, socioeconomic…
A recent study examined three different follicular lymphoma (FL) patients to try to better understand how the disease presents differently for different individuals. Ultimately, this study has reiterated the importance…
Are opioids an effective and frequently-prescribed treatment for hemophilia? Actually, according to Hemophilia News Today, opioids are prescribed at a much higher rate than reported. This suggests that doctors and…
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