Alex Biagi was planning to try out for his high schools basketball team, and could already dunk. He said his dream was to be a professional basketball player. He grew…
According to an article in the Asco Post, the FDA granted accelerated approval to Merck's KEYTRUDA®, pembrolizumab, for the treatment of metastatic small cell lung cancer (SCLC). The drug targets…
On Wednesday April 22nd, 2020, the World Orphan Drug Congress held a one hour webinar that was focused on how the rare disease community could respond to the ongoing coronavirus/COVID-19…
According to Psychology Today, French physicians may have discovered new early symptoms of COVID-19: dyshydrosis and urticaria. Though the article is published in French, you can read the dermatologists'…
As reported in the CCA Blog, COVID-19 is reminding everyone what self-care means. When we can't rely on turning outwards to seek joy and comfort and good health, we must…
COVID-19 is difficult for many of us. We are facing an unprecedented time and questions abound. How do we handle our work, our families, our health? If you are a…
The ME Association has recently published its latest weekly "research roundup" for the week of April 17th. This includes the latest research related to myalgic encephalomyelitis (ME), also known as…
Happy day 134 of quarantine! Today, we're highlight four articles. First, to lift your spirits, we have a story of a young boy who made a recovery from a rare…
According to a story from Yahoo News, there's no denying that the coronavirus/COVID-19 pandemic is an unprecedented experience for millions of people around the world. However, it can be especially…
We’ve all heard of the common symptoms of COVID-19 infection: fever, body aches, loss of taste and smell, and a dry and persistent cough. But according to Stat News, doctors…
According to a recent article in the Harvard Gazette, researchers from Harvard announced the results of a study involving animal models that brought about immunity and lasting recovery against acute…
Seattle Genetics, Bothell, Washington recently issued an announcement through Drugs.com that the FDA approved Tukysa™ combined with capecitabine and trastuzumab for patients with metastatic HER2-positive breast cancer. The drug combination…
In a story from Vietnam News, doctors in Hanoi, Vietnam at the Central Paediatrics Hospital announced for the first time that they had performed a successful bone marrow transplant using…
As reported in CCA Kids Blog, the state of the world right now leaves us with many unanswered questions that can trigger a mayhem of emotions. When reconciling something that recolors…
A new study is seeking to understand how the ongoing coronavirus/COVID-19 pandemic is impacting patients with a rare blood cancer called Waldenström's macroglobulinemia (WM). The research is to be conducted…
12-year-old hockey player Tyler Singletary is a great team player and master on the ice. But, as reported by CBS17, Tyler found himself up against a new opponent in 2019…
With COVID-19 spreading across the country, many people are now thinking of how to keep their friends, their families, and themselves safe from the virus. But for those whose…
April is recognized as Fabry Disease Awareness Month by the Fabry community in the US and several other countries around the world. Advocacy groups such as the Fabry Support &…
For the last month, the world has been living through a pandemic: COVID-19. The situation is rapidly changing daily. As of April 13, there have been 1.8 million diagnosed…
Want to learn more about recognizing symptoms and diagnosing patients? In a MedPage article, authors encourage readers to follow along on a case study to understand why a 58-year-old…
According to a story from koco.com, the community of Ada, Oklahoma, recently held a birthday celebration for a local affected by Alexander disease. Hunter Goodwin recently turned 18 years old,…
You've most likely heard of COVID-19. Although the numbers seem to constantly be growing, the current amount of diagnoses sits at just about 2.1 million people. In many articles, you'll…
As originally shared in Tech Startups, an Israeli biotech company called Pluristem has created a placenta-based cell therapy to treat patients with COVID-19. So far, the therapy, which uses PLacental…
According to a story from PR Newswire, the National Organization for Rare Disorders (NORD) has just recently kicked off a COVID-19 Critical Relief Program. In alignment with its mission to…
The ongoing coronavirus/COVID-19 pandemic has caused widespread uncertainty across the globe, and a lot of us have questions about what to do or what to expect. The rare disease community…
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