This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter here. To state the blatantly…
According to CNN, the CDC recently sent out a health advisory to doctors across the United States alerting them of a new syndrome affecting children in eighteen states, Washington, D.C.,…
COVID-19 was declared a pandemic in March, marking a distinct change in daily life. With nearly 4.5 million diagnosed cases worldwide, it is no wonder people are concerned about the…
According to a recent press release published by the National Institutes of Health (NIH), a new survey spearheaded by the Rare Diseases Clinical Research Network (RDCRN) is seeking to understand…
COVID-19 diagnoses are growing at a rapid rate, to the point where data is changing daily. As of today, there are 4.23 million diagnosed cases worldwide, with 1.39 million in…
In the face of COVID-19, considerations and procedures regarding the use of radiation for blood cancer patients may need to be modified. When the risk of severe infections from COVID-19…
By Natalie Homan from In The Cloud Copy The United States goes through blood shortages from time to time when donation numbers drop, usually because of summer travel. In March…
As the world grows more technologically advanced, so does the medical field. Doctor-patient communication can happen over the phone or email. Telemedicine abounds. More technology is being pointed towards remote…
By Natalie Homan from In The Cloud Copy In the United States, about 14% of students receive special education services. This means that around 7 million children and teens have…
Normally the immune system will go on the attack against a foreign invader such as a germ and then return to standby mode. But according to a report in…
New information, speculation, statistics, and predictions about COVID-19 are hitting the internet every day. Yet neurologists are attempting to answer their patients’ questions without having sufficient data that would…
According to a recent report by CNN, the UK Health Service sent an alert to general practitioners warning of a rise in the last three weeks of children who…
A recent article in Biospace reported an 83% survival rate for COVID-19 patients after two infusions of the experimental drug Ryoncil, developed by Mesoblast Ltd. The patients who were…
Minorities and Healthcare As a whole, racial minorities, particularly black and Latino people, have more health comorbidities. This is due to a wide array of factors including structural elements, socioeconomic…
With 4.15 million cases across the globe, COVID-19 is at the forefront of discussion. Knowledge about the viral pandemic continues to grow each and every day. Yet there are still…
Sean Boyle is a PhD candidate at Emory University. He just signed up to participate in a trial for a coronavirus vaccine when he doesn't know the risks. That's because…
According to a story from abc7.com, a recent case study has identified what scientists believe to be the earliest case of a pediatric COVID-19 patient presenting with symptoms of pediatric…
If you're like me, you've been refreshing the news every day trying to find more information on COVID-19. After all, life changed in March; the global pandemic and its associated…
If you're like me, COVID-19 has become a major part of your life: in research, discussion, or just daily impact. That's no surprise, considering the numbers. At the time of…
The COVID-19 situation is rapidly evolving every day. At the time of this article, there are just under 4 million diagnosed cases worldwide, with 1.3 million in the United States…
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?…
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