For nearly one year now, COVID-19 has dominated our headlines. In 2020, news emerged of SARS-CoV-2, a virus causing a global pandemic. Now, in February 2021, there are 110 million…
An NIH news release shared that a study on polycystic ovarian syndrome (polycystic ovary syndrome or PCOS) discovered that the condition might have two distinct subtypes based on genetic mutations. Through…
According to a story from news-medical.net, the National Institutes of Health (NIH) has doled a total of $31 million on grants this year to 20 different research teams. The goal?…
As originally reported by EurekAlert, eosinophilic gastrointestinal disorder research will receive a boost with the renewal of a $7.57 million grant administered over five years awarded to the Cincinnati Children’s…
As originally reported in the Washington Post: many parents of children with rare diseases are familiar with the agony of mystery surrounding their children’s medical conditions. The frustration of searching…
The Mental Health Rare Genetic Disease Network (MHRGDN) is a newly launched system, developed by the National Institute of Mental Health. The MHRGDN spans 15 research sites across the country…
According to the Wall Street Journal, the National Institutes of Health (NIH) has reversed its initial decision to prevent two of its researchers from meeting with federal investigators to comment…
We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation. Its latest stop was…
According to a report by BioSpace, the United Kingdom’s National Institute’s of Health (NIH) recently diagnosed 31 conditions that were not previously recognized. The results date back to an initiative…
Following Rare Disease Day at the NIH Clinical Center in early March, we spoke to the NIH about remaining questions we had pertaining to rare disease research. We are impressed with…
In the beginning of March, Patient Worthy joined many other groups from the rare disease community for Rare Disease Day at the NIH Clinical Center, an event which you can…
Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease. Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP).…
When my son was eight years old he joined the swim team. For two hours a day, five days a week, he splashed around the pool mastering the Australian Crawl…
If you or someone you love has been diagnosed with idiopathic pulmonary fibrosis (IPF), it's easy to become discouraged by the lack of medical options. Although almost 50,000 people a…
Patient Worthy attended the NIH‘s National Center for Advancing Translational Sciences NCATS meeting and in a word: WOW! Start with the patient- the end user, the source of the aberrant…
In the US, the rare condition glomerulonephritis is the third leading cause of the last stage of chronic kidney disease (CKD). A clinical trial sponsored by the National Institutes of…
Need to get your inspiration fix for sickle cell anemia (SCA)? Look no further! A short and simple video is a click away a la the National Institutes of Health…
Happy Spring Patient Worthians! This week we have pieces from two rare women, one battling the rare disease pemphigus vulgaris, part of the pemphigus and pemphigoid family. The other is…
After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…
Sólo quedan TRES días más para que las familias, los grupos de defensa de los pacientes y los investigadores den aportes a la nueva iniciativa del NIH sobre la investigación…
Cuando Skyelah nació, su madre Angela inmediatamente notó que algo era diferente. Ella tenía tres otros hijos que arrullaron y sonreían como niños. Skyelah rara vez lo hacía, de…
You may or may not know that Cushing’s disease can be challenging to diagnose because no two cases are exactly the same. People can experience symptoms or even a combination…
Here at Patient Worthy, we know how hard it can be trying to find information online about rare diseases. Blogs about personal experiences can highlight the worst aspects of a…
Good day to you PatientWorthians! We can't express to you just how excited we are to be attending this year's Rare Disease Day® at the NIH main campus. As laid out…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
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