A few months ago, many of us were living completely different lives: going to rare disease conferences, heading to work each day, going out for food, seeing family and friends.…
NORD has received thousands of phone calls and emails each week from concerned rare disease patients. They are asked for advice and how to decipher the myriad of contradictory information…
According to a recent article in Nature, many countries are anticipating an immediate response from newly developed antibody tests. These tests are slated to bring relief from the lockdown and…
Loneliness is difficult for everyone regardless of the situation, but the current pandemic has definitely amplified it. In a time of isolation and distancing, it's difficult to not feel alone.…
By Natalie Homan from In The Cloud Copy The new reality of the COVID-19 pandemic means that workplaces are changing very quickly. This requires every employee to adapt, and neurodiverse…
By Natalie Homan from In The Cloud Copy In the United States, a disease is considered “rare” if it affects less than 200,000 Americans at any given time. Diseases can…
Patient Worthy is honored to present Dr. Eunice Wang, who has herewith responded to questions from our readers about the effect of the COVID-19 virus on their cancer treatment. Dr.…
Every day, we learn more and more about COVID-19. This viral pandemic has nearly 4.9 million diagnosed cases worldwide, with 1.5 million in the United States alone. As more about…
From social distancing and shuttered businesses to personal health concerns, COVID-19 has changed daily life for the foreseeable future. There are nearly 4.75 million diagnoses worldwide, with 1.53 million in…
Multiple biotechnology and pharmaceutical companies have joined in the fight against COVID-19. But one, Gilead Sciences, has been at the forefront of both progress and controversy. The company developed remdesivir,…
In her early 20's, Mackenzie Alleman lost her mother to breast cancer. Then, at 28, she herself underwent a preventative double mastectomy after learning that she carried the mutated BRCA1 gene.…
The Change in Hospitals Due to COVID-19 Between 10 and 15 percent of all hospital staff is forced to isolate due to the virus at any one time. This means…
Contact Tracing Contract Tracers are an essential component to stopping the spread of COVID-19. Essentially, it entails finding those exposed to the virus and quarantining them until they are no…
It is no secret that COVID-19 has turned life as we know it upside down. It has changed everything from hanging out with friends to working to going grocery shopping.…
Disposable Scopes Disposable scopes are exactly as they sound. Medical scopes utilized for the bladder, lungs, colon, etc. can be made reusable or disposable. Disposable scopes allow faster and more…
Blood clots and fever and coughing: oh my! As COVID-19 spreads throughout the globe, researchers are discovering more and more symptoms associated with this novel coronavirus. But what happens after recovery? Well,…
In 2003, a respiratory illness called Severe Acute Respiratory Syndrome (SARS) swept the globe. The condition, caused by a coronavirus, spread throughout two dozen countries, infecting 8,098 people and killing…
By Natalie Homan from In The Cloud Copy The COVID-19 pandemic has changed the lives of millions around the world in an incredibly short span of time. It’s hard to…
By Natalie Homan from In The Cloud Copy Two businesses that advocate for patients with rare and orphan diseases announced recently that they are teaming up to help patients get…
This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter here. To state the blatantly…
According to CNN, the CDC recently sent out a health advisory to doctors across the United States alerting them of a new syndrome affecting children in eighteen states, Washington, D.C.,…
COVID-19 was declared a pandemic in March, marking a distinct change in daily life. With nearly 4.5 million diagnosed cases worldwide, it is no wonder people are concerned about the…
According to a recent press release published by the National Institutes of Health (NIH), a new survey spearheaded by the Rare Diseases Clinical Research Network (RDCRN) is seeking to understand…
COVID-19 diagnoses are growing at a rapid rate, to the point where data is changing daily. As of today, there are 4.23 million diagnosed cases worldwide, with 1.39 million in…
In the face of COVID-19, considerations and procedures regarding the use of radiation for blood cancer patients may need to be modified. When the risk of severe infections from COVID-19…
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.
