As reported in Multiple Sclerosis News Today, Jessie Ace tells the story of receiving her diagnosis with multiple sclerosis at 22. She wrote, "I hate needles." She ranks being told…
Christopher Cowan and his lab at the Medical University of South Carolina recently conducted a study in mice in order to understand how defective MEF2C genes impact brain development. A…
A study has recently been conducted that suggests that rituximab may be preferable over traditional treatments for myasthenia gravis. It also concluded that tiuximab is the most effective if it…
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…
AVROBIO AVROBIO is based out of Cambridge, Massachusetts. They specialize in single-dose gene therapy as a cure for rare genetic conditions such as cystinosis, Gaucher disease, and Fabry disease. Most…
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…
Seelos Therapeutics has recently received the Rare Pediatric Disease Designation for their Sanfilippo syndrome treatment, trehalose. This designation is an incentive for companies to make therapies for conditions with an…
Every day, medical researchers look to learn more about rare diseases, symptoms, and treatment. Recently, the Muscular Dystrophy Association (MDA) connected with Dr. Priya Sunil Kishnani, MD, MBBS to discuss what…
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 At 41, Tiffany Wedekind, of Columbus, Ohio, has lived much longer than her doctors could have hoped when she was diagnosed with…
For Emma, the worst part of receiving her diagnosis with ankylosing spondylitis wasn't adapting to the constant pain, losing her breath over five minutes of standing, being too exhausted to…
Patient Worthy is working with a partner agency who is looking to engage with patients living with Shingles. If chosen, participants will have the chance to take part in a…
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…
In a story from MedCity News, while some studies grind to a halt with coronavirus restrictions, some of the medical world is using the new limitations to formulate creative solutions…
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…
Mobile County Mobile County has unfortunately become one of the hotspots for COVID-19 in Alabama. But individuals and organizations are working tirelessly to help their community. Individuals Catherine Drake has…
By Danielle Bradshaw from In The Cloud Copy It has been shown in a recently published trial that satralizumab could potentially reduce the risk of neuromyelitis optica spectrum disorder (NMOSD)…
As reported in Med Gadget, Medtech company ’11 Health’ has made virtual healthcare affordable this quarantine season, providing patients with severe chronic digestive disorders 12 weeks of free access on their…
By Jodee Redmond from In The Cloud Copy Dr. Kristina Simonyan has been studying patients with laryngeal dystonia. Through the scope of her work, she has heard numerous anecdotal accounts…
As reported in Vox, Amber Freed set into to motion when she learned her son Maxwell's genetic disorder made him just the 34th in the world to be diagnosed with…
As reported in Liverpool Echo; Faye was just 12 she began to have difficulty walking. She didn't realize it was her first encounter with the devastating disease that she had…
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.…
As a child, my favorite fairy tale was about a princess who is locked away in a tower and guarded by a terrible dragon. Finally, a prince comes along, slays…
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…
As reported in Technology Network, a group of international scientists from the VIB-UGent Center presented a new antigen immune cell. These antigen-presenting cells belong to a group of dendritic cells…
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