According to BioSpace, Biohaven Pharma has utilized their MATE platform to create and develop a hyperimmune globulin mimic (HGM) that is able to both bind to and neutralize various strains…
Note: This guide was originally published on cysticfibrosis.com Written by Imogene The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the…
As the pandemic rages on, doctors across the country are beginning to notice a trend. A number of children who have contracted COVID-19 have also been impacted by a rare…
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…
The NZ Herald recently published details about the experience of seven-year-old Logan Walsh of Leeds, England. His mother was told to take Logan home after he had been diagnosed with…
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…
Much of our news in 2020 was filled with headlines around COVID-19, the viral pandemic which now has over 96.2 million global diagnoses. As we enter into 2021, the numbers…
The statistics are grim. A survey of 12,000 US nursing homes finds over 56,000 COVID related deaths as of July 2020. This number represents ten percent of all cases in…
Hayden Grosvenor is used to spending time in the hospital. He has Langerhans cell histiocytosis (LCH), a rare condition that is characterized by an excess of white blood cells. Because…
Research During COVID Many medical research projects have faced hurdles since the pandemic has started. Regulators have changed development timelines, and many have had to delay their clinical trials due…
Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease patients are no exceptions. Barbra…
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.…
Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system. She explains how she didn’t own a single N95…
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,…
Pulmonary fibrosis is a condition that is caused by scarring of the lungs which can lead to shortness of breath and other respiratory issues. Some cases of COVID-19 have lead to…
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…
Recently, Business Insider reported on published, peer-reviewed results following the Adaptive COVID-19 Treatment Trial (ACTT-2). The Phase 3 clinical trial, sponsored by the National Institute of Allergy and Infectious Diseases…
.jpg)
Since March, most of the globe has been anxiously awaiting updates on COVID-19, the virus that has infected over 74 million people. One update was just released: the CDC has…
For most of 2020, the coronavirus pandemic has dominated the headlines. What began earlier this year has transformed into a viral crisis with 69.8 million cases worldwide. To stifle the…
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.…
For the entirety of 2020, our lives have been dominated by COVID-19, the novel coronavirus linked to 64.5 million cases and 1.49 million deaths across the globe. In the United…
Michael George and his team from the University of Pennsylvania have recently uncovered new insights regarding autoimmune patient’s comfortability with care during COVID-19. They've been working since the pandemic began…
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…
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.
