Unfortunately, gaining access to care within the rare disease space can be difficult. There is often lesser education and awareness about rare conditions, less research performed, and poorer access to…
Earlier in 2023, Ohio Senators Stephen Huffman (R-Tipp City) and Kirk Schuring (R-Canton) introduced Senate Bill 9. This Bill sought to amend the medical marijuana law in the state…
Children with cystic fibrosis (CF) born between 1995 and 1999 had an estimated life expectancy of 32 years. Advances in both research and treatment have contributed to increased life…
In many cases, babesiosis - a rare parasitic illness - is not fatal. Some individuals who are infected with babesiosis are even asymptomatic, meaning they don't show any symptoms.…
Emergency Room (ER) doctors are gradually being replaced by physician assistants and nurse practitioners. The Neiman Institute reported that between 2005 and 2020 the number of ER visits with midlevel…
Nipah virus was first discovered in 1999 following an outbreak in people and pigs in Malayasia in Singapore. Since then, the zoonotic disease has spread, causing nearly annual outbreaks in…
Currently, C5 inhibitors such as eculizumab and ravulizumab are considered the standard-of-care for people living with paroxysmal nocturnal hemoglobinuria (PNH). Unfortunately, not all patients respond well to these therapies.…
To those within the rare disease community, it is no surprise that therapies and drugs can sometimes be exorbitantly expensive. However, Spain’s National Markets and Competition Committee (CNMC) is…
Familial hypercholesterolemia (FH) is an inherited form of very high cholesterol. Early treatment is needed for those living with FH to lower cholesterol levels and reduce the risk of heart…
According to an article in GastroEndo News, first published in Clinical Oncology News, the U.S. Food and Drug Administration (FDA) recently approved a combination of durvalumab and gemcitabine plus…
In 2019, Takeda Pharmaceutical Company experienced some manufacturing and production issues related to its product Natpara, a treatment option for individuals with hypoparathyroidism. The product was recalled in the…
Each year, an estimated 2.9 million cases of cholera are reported across the globe. Caused by Vibrio cholerae (V. cholerae) bacteria, cholera can cause shock, dehydration, and even death.…
Human papillomavirus (HPV) types 16 and 18 play a huge role in the development of cervical cancer. In fact, an estimated 70% of cervical cancer cases result from these…
Have you ever heard of Orphan Drug designation? This designation is granted by the FDA for drugs or biologics intended to treat, diagnose, or prevent rare conditions. Rare conditions…
Currently, there are upwards of six million people in the United States alone living with Alzheimer’s disease. As some researchers work to determine the exact cause of this neurodegenerative…
Those with multiple myeloma within the European Union will soon have access to a new therapeutic option. An article for Cancer Network shares that the European Commission (EC) approved…
In late June 2022, Patient Worthy discussed how doctors and scientists were concerned about rising rates of nonalcoholic fatty liver disease (NAFLD) in Filipinos. But according to new research, the…
Have you ever heard of Orphan Drug designation? In the United States, this designation is granted by the U.S. Food and Drug Administration (FDA) to drugs or biologics intended…
The Marburg virus, caused by Marburg marburgvirus (MARV), was first identified in 1967 after hemorrhagic fever outbreaks occurred in laboratories in Serbia and Germany. Since its initial identification, Marburg…
In a news release, biopharmaceutical company Fulcrum Therapeutics, Inc. ("Fulcrum") shared that the first patient was dosed in the Phase 3 REACH study. Within the study, researchers are evaluating…
Pulmonary arterial hypertension (PAH) is a chronic and progressive form of high blood pressure in the lungs which can result from a number of causes: HIV, sickle cell disease,…
Over the last few decades, there have been immense advancements in medical technology and care options. However, not all of these advancements contribute to better patient outcomes. For example, more…
Altogether, an estimated 15-30% of people around the globe have nonalcoholic fatty liver disease (NAFLD), a condition in those who drink very little or not at all which mimics liver…
It is very rare that one might say that a car accident saved their life – but Yolanda Carusciello, who lives in Brooklyn, can say just that. Of course, when…
When they found out that they were having a son, Nash and Callie Horne were thrilled. They even decided to name their son Nash as well. But then an unexpected…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
