When Shellye Horowitz was younger, she had a clear link to the rare disease community: her father. He had hemophilia and, much like many patients, relied on blood clotting factor…
A total of one hundred vaccines are being developed by researchers, drug manufacturers, and governments worldwide in an effort to stem the tide of the COVID-19 virus. Reuters Newswire reports…
COVID-19 has rapidly spread across the globe. With nearly 2.7 million diagnosed cases, the medical field is overworked. As a result, many hospitals and doctors are experiencing a lack…
Of course, parents are not used to taking on the role of educator. Many are still working full time jobs at home. That, in addition to the normal household chores,…
As COVID-19 continues to spread, and the length of our lockdowns increases, many patients with rare diseases and their families are wondering what comes next. How will you receive treatment?…
According to a release from the UVA Health System Newsroom, Dr. Zhen Yan, PhD, discovered that exercise can reduce or totally stop severe respiratory symptoms associated with acute respiratory…
According to the American Journal of Managed Care, a case study in China has shown that tocilizumab was effective in treating a patient with both COVID-19 and multiple myeloma. When…
The world has now hit over 3.5 million diagnosed cases of COVID-19, with 1.2 million cases in the United States alone. Although the pandemic started in December or January, the…
According to a story from Buzzfeed News, the ongoing coronavirus/COVID-19 pandemic has put the brakes on critical rare disease research all over the globe, ranging from early, highly experimental studies…
A recent study conducted by a government agency, NIAID, offered preliminary evidence of Remdesivir’s benefit to COVID-19 patients. The drug is heralded as the first antiviral drug to improve COVID-19…
If you're like me, news about COVID-19 has been dominating your life recently. The novel coronavirus rapidly spread across the world over the past few months. At the time…
Ibudilast is a drug that has been used to treat asthma, but it is now being evaluated as a treatment for COVID-19. Acute respiratory distress syndrome (ARDS) is a severe…
According to a story from Barron's, the biotechnology company Alexion Pharmaceuticals has recently announced plans to test its drug Ultomiris as a potential treatment for COVID-19. As the scientific community…
Saying "coronavirus changed the world" seems like a bit of an understatement right now. Jobs have embraced "work from home" en masse. Doctor's appointments are being rescheduled, school is online, and most…
George and Josie Taylor fell in love in their 20s. 52 years later and happily married, the couple believed that they could conquer anything together. But COVID-19 threw a…
As COVID-19 continues to spread, more and more people are wondering how they might be affected. If you're a member of the rare disease community, you know it can be…
As noted recently in an article published by Cancer Network, the FDA has cleared CYNK-001 for use in COVID-19 patients. When the investigational new drug (IND) application is submitted to…
According to a story from Live Science, the ongoing coronavirus/COVID-19 pandemic has upended daily life in a myriad of ways and can make leaving the house feel a little intimidating.…
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…
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…
For Mallory Holloway, precautions to avoid lung infections have been a part of her daily life for a long time. This is because she lives with cystic fibrosis, 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…
As initially reported by France24, researchers from the United States and China have discovered that artificial intelligence may play a crucial role in understanding the impact of COVID-19 on…
According to a press release from the American Society of Clinical Oncology (ASCO), they recently began the ASCO Registry to assist and inform patients with cancer and their families…
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