New Findings May Lead to Potential Treatments for Blindness Caused by Blunt Trauma
Blunt trauma from car accidents contribute to optic nerve damage and blindness. Glaucoma is also responsible for similar optic nerve damage. It is known to be the second worldwide cause…
Discussing the New COVID-19 Variants
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…
New Study Suggests 2 Gene-Based Subtypes of Polycystic Ovarian Syndrome
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…
NIH Commits Millions in Grant Funding for Rare Disease Research
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?…
Eosinophilic Gastrointestinal Disorders Research Receive $7.57 Million In Grant Renewel
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…
Desperately Seeking Solutions: Parents Create their Childs Therapy Themselves
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…
New Grant Could Help Physicians Provide “Anticipatory Health Care Instead of Responsive Sick Care”
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…
NIH Reverses Decision, Allows Doctors to Speak to Federal Investigators About Sepsis Study Objections
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…
NIH Apologizes for Censorship of Rare Disease Artwork
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…
Undiagnosed Disease Network (UDN) Identifies 31 New Conditions
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…
NIH Discusses How Rare Advocacy Groups Can Fund Research and Answers More Questions
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…
NIH Breaks Down Rare Research Funding Prioritization
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…
Community Stays up Late with Rare Disease ‘Moon Child’
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).…
UHS: Rare Disease Causes the Ultimate Bad Hair Day
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…
ICYMI: People with IPF May Breathe Easier with New Stem Cell Treatment
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…
What You Need to Know About the NIH’s NCATS Meeting
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…
Lowering Blood Pressure Could Help People with Chronic Kidney Disease
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…
Stem Cell Treatment for Sickle Cell Anemia: Is It ONLY for Rich People?
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…
Editor’s Choice: Consequences of Unintentional Exploitation in Rare Disease
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…
Is NIH Funding in Trouble?
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…
Anuncio: 3 días para la presentación de entrada a la nueva iniciativa del 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…
Un viaje de Muckle-Wells: La historia de Skyelah
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…
How These 12 Symptoms May Increase Your Risk of Cushing’s Disease
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…
What’s the Best Way to Start Your MG Journey?
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…
