Hey, hand-washing friends! We hope everyone is staying safe and clean right now. Of course, the world is reckoning with Covid-19 right now-- and the rare space is no except.…
By Danielle Bradshaw from In The Cloud Copy Pompe disease is the lack of a specific protein within the body that helps break down glycogen - a complex sugar that…
Hope everybody is catching up after Rare Disease Week! We're so glad we got to see advocates and patients at RDW making the rare voice heard in DC last week.…
By Danielle Bradshaw from In The Cloud Copy Neurofibromatosis type 1 (NF1)-related plexiform neurofibromas (pNFs) is a condition that many children struggle to manage due to a lack of proper…
By Jodee Redmond from In The Cloud Copy A recent study suggests that certain antibodies could be linked to specific human leukocyte antigen (HLA) genes and environmental components in scleroderma.…
By Danielle Bradshaw from In The Cloud Copy A Tufts University science team was able to identify a means to possibly reverse Friedreich’s ataxia. Friedreich’s ataxia (also known as…
By Gracie Van Brunt Hi! My name is Gracie Van Brunt, I am 25 years old and I have a rare disease. At the age of 2, I was…
By Natalie Homan from In the Cloud Copy Most people have heard of type 1 and type 2 diabetes. Many do not know, however, that there is an “intermediate” form…
By Natalie Homan from In The Cloud Copy Theo Thomas of Secret Harbour, Australia, may be a shy, soft-spoken 8-year-old, but he loves racing his motorcycle in his town’s Lightweight…
By Rachel Whetstone from In The Cloud Copy Many patients with myelodysplastic syndromes (MDS) are elderly when they’re diagnosed with the disease. Although stem cell transplants are often thought to…
By Jodee Redmond from In The Cloud Copy Living with a chronic disease is a very stressful situation. It affects a person physically, mentally, emotionally, and spiritually. Chronic illnesses often…
Happy Almost-Friday! This week, we're highlighting two organizations: one helps patients seeking gene therapy learn about the treatments, and the other helps families affected by a newly-recognized condition. After that,…
By Jodee Redmond from In The Cloud Copy Four United States senators have introduced a new law that, if passed, will assist children living with rare disease to receive tests…
By Danielle Bradshaw from In The Cloud Copy 13-year-old Cam Howard, a young Pittsburgh resident, recently did an interview with the Pittsburgh KDKA News’ Kristine Sorensen where he opened up…
Happy Valentine's Day! We hope everyone's enjoying some treats and appreciating the people they love today-- whether that's a romantic partner, a friend, or a family member. We're starting out…
The National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) and the Center for Biologics Evaluation and Research (CBER) of the Food and Drug…
Happy Thursday! This week, we're highlighting a story about a story about Karina, an EDS patient and advocate. Next, we have a story about a legal controversy that could affect…
Happy Thursday! This week, we're highlighting a story about a research update on the lung microbiome and how it can be used to predict IPF outcomes. Next, we have an…
I've been hearing people buzz about compression socks/stockings for a while, but I've never invested in a pair myself. They're basically what they sound like-- socks or stockings that... compress.…
By Rachel Whetstone from In The Cloud Copy The Orphan Drug Act of 1983 was created to encourage the development of drugs to help people with rare diseases. Drug companies…
By Rachel Whetstone from In The Cloud Copy When Helisabed Romano was pregnant with her daughter, she got some bad news. The the developing baby had spina bifida, a defect…
Happy Thursday! This week, we're highlighting a story about a boy in Texas whose illness sparked concern about bacterial meningitis. Next, we have a piece from PW contributor Rebekah Palmer…
By Rachel Whetstone from In The Cloud Copy Justin Stufflebean was 27 years old when he died after being taken to Missouri Western Reception, Diagnostic and Correctional Center (WRDCC). He…
By Rachel Whetstone from In The Cloud Copy New research from Lancaster University shows a genetic change that is common in cases of both autism and Tourette’s syndrome. Early research…
By Rachel Whetstone from In The Cloud Copy Peggy Nipper was struggling with polycystic kidney disease (PKD). Her kidneys were beginning to fail after developing numerous cysts. It can often…
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