In a recent contribution to MSN, Dr. Christopher Austin, director of the NIH Advancing Translational Sciences, compared the medical community’s record-breaking approach to the COVID-19 pandemic with current efforts…
COVID-19 has caused long-term, ongoing symptoms for some patients. Up until recently, these individuals had been called "covid long haulers." Anthony Fauci, during a White House briefing, has recently changed…
Over the last year, news of COVID-19 has dominated the headlines. Caused by SARS-CoV-2, a coronavirus, the global pandemic is now associated with 116 million diagnoses worldwide and 2.57 million…
Living with a rare disease can be difficult and scary for some, especially during a global pandemic that has affected millions. This Nottingham father knows these feelings firsthand; he lives…
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…
11-year-old Oliver Shultz is recovering at home after two weeks of stress and fear. It began with an ache in his back, followed by a fever. Soon, the family was…
Parkinson's Disease Parkinson's disease is a condition which affects the nervous system. The progressive disease influences movement, and can lead to a wide array of symptoms. These may include- Tremors Stiffness…
NORD's COVID-19 Vaccines Update Webinar FDA and CDC Leaders Address the Rare Disease Community January 15, 2021 NORD, in collaboration with the Muscular Dystrophy Association, Cystic Fibrosis Foundation, and The…
As reported in EMJ Reviews; the novel coronavirus has gripped the world— fueling a wave of medical innovation and prioritization. However, the excess of need has made the normal flow…
As reported in EMJ Reviews, the world is on alert, being told to wash their hands and keep distance amidst the COVID-19 pandemic. However, patients with inflammatory bowel disease (IBD)…
Eurordis The European Organization for Rare Diseases (Eurordis) is a nonprofit organization which organizes over 930 rare disease groups into one alliance. Groups have joined the network from 73 different countries.…
For the last year, COVID-19 has dominated the headlines. The viral pandemic, present in over 200 countries and territories across the globe, is responsible for 86.7 million cases worldwide,…
by Lauren Taylor from In The Cloud Copy COVID-19 has now been wreaking havoc on our country and world for months, with little end in sight. It came very quickly…
A review of COVID-19 data from the UK shows that patients with rare autoimmune rheumatic disease (RAIRD) face a higher mortality risk, according to an article in Healio. The study,…
While there is still a lot left to learn about COVID-19, there are a number of facts that we know, one of which is that children face less severe cases.…
According to a story from Newswise, the ongoing coronavirus/COVID-19 pandemic has become the subject of wild speculation. In our divided nation, many people have chosen to hear what they want…
Navigating a Rare Disease in a Pandemic The COVID-19 pandemic has affected everyone, but those already living with a rare disease have unique challenges. With a compromised immune system, they…
According to a story from Charcot-Marie-Tooth News, patients living with Charcot-Marie-Tooth disease have reported in a recent survey that their symptoms of pain and decline in mobility increased during the…
As reported in the BBC; Aaron Bradley is concerned that returning to work will endanger his son’s health. This follows the Scottish governments decision to move his toddler off of…
The entire world has been waiting for a vaccine for COVID-19 since the beginning of the pandemic in March. In response, a number of pharmaceutical companies have entered the race…
According to Newswise; in a new review of studies which looked at 36 studies on the COVID-19 virus found that almost one in five people with COVID-19 only show gastrointestinal symptoms,…
For nearly all of 2020, news of COVID-19 dominated the headlines. The first U.S. lockdowns associated with the viral pandemic occurred in March. Now, in November, the novel coronavirus…
The FDA has officially approved remdesivir for the treatment of adults and children (over the age of 12 and weighing at least 40 kg) who have been hospitalized for COVID-19.…
As reported in BioSpace, the FDA shocked Mesoblast executives, a stem-cell research company, when this October, they rejected the Biologics License Application (BLA) for the drug Ryoncil, meant to treat…
A recent study has found a 12.5% improvement for patients with severe COVID-19 when baricitinib was used in combination with remdesivir. That means a faster recovery time for patients and…
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.
