The San Francisco Chronicle had a pretty neat story about how one man's post-cancer neurological issues lead to a so-rare-it's-still-unnamed disease diagnosis. And tracking how we got to the movement…
Any Noles fans? Well, prepare to love them even more. Last weekend, players on the Florida Statue University Seminoles football team participated in FSU’s annual “Lift for Life” event, which raises…
Some of us here may have heard of Camp Sunshine -- which provides retreats "combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses…
The NIH has awarded Geisinger Health System, along with the University of Washington in Seattle and Washington University in St. Louis, a $5.8 million, five-year grant to study the role of…
Rare disease drug development, which now accounts for nearly one-third of all drugs in active research & development worldwide, presents challenges that will accelerate the adoption of new development strategies…
Eurordis-Rare Diseases Europe Eurordis-Rare Diseases Europe is an alliance of patient organizations which works to give rare patients a voice. It also strives to spread awareness of rare diseases to…
Dinesh Khanna, a professor at the University of Michigan has worked heavily with the rare disease scleroderma. Michigan has its own Scleroderma Program, of which Khanna is the director. Through…
Happy 7-11 Day! We hope everyone's on their way to get their free slurpie today! For this week's editor's choice, we're highlighting four articles. First, we discuss kratom, the controversial…
As reported in Biospace, xpovio (selinexor), a drug used to treat relapsed refractory multiple myeloma, received accelerated approval by the Food and Drug Administration this July. About Multiple Myeloma Multiple…
Kratom, an herbal supplement of the caffeine family used to ward off pain for chronic pain conditions, has received large grants for further research. While many consumers claim the supplement…
According to a story from Ankylosing Spondylitis News, a recent study has found that the class of drugs known as tumor necrosis factor (TNF) inhibitors may actually be safer for…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. The event will take place in Iowa City, Iowa on Saturday July 20th, 2019. Event Summary:…
According to a story from Wellcome Center Mitochondrial Research, a multi-center collaborative study that involved researchers from different sites around the UK has resulted in an improved understanding of the…
According to a story from PR Newswire, the drug selinexor (marketed as Xpovio), which was developed by Karyopharm Therapeutics, was recently approved by the US Food and Drug Administration (FDA)…
Camp Notaclotamongus In Eureka, Missouri, Camp Notaclotamongus has some typical activities for a summer camp. They state that camper goals aim to build friendships, confidence, and personal growth with outdoor…
July 13th is GIST Awareness Day! Let's learn a little more about this rare form of cancer, and then see what we can do is raise more awareness! What are…
Frankie Jr. Muretic Frankie Jr. Muretic lives in Mississauga in Ontario, Canada. One morning he woke up with a rash, causing his parents concern. They brought the five-year-old boy to…
According to a story from news-medical.net, a team of scientists affiliated with the Swedish Karolinska Institutet have developed a new method for categorizing patients with the rare inflammatory bowel disease…
July is hemochromatosis awareness month - and in its honor, below is some useful information that could provide helpful. One thing to remember about Hemochromatosis is that early detection is…
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The FDA is putting patients with rare diseases front and center knowing that these patients have little support and in many cases cannot find specialists to diagnose and treat their…
Seems like we JUST had a presidential election, right? But we're in the dead of summer 2019, inching closer to a presidential election that will once again take over our…
Happy Fourth of July Season! Today, we're highlighting stories about research and social media, robots in caregiving, sisters carrying each others' babies, and AI advancing glioblastoma research. After this past…
Inflammatory Bowel Diseases Inflammatory bowel diseases (IBD) is the overarching term for both ulcerative colitis and Crohn's disease. In Canada, there are around 270,000 individuals living with the one of…
According to a story from Newswise, scientists affiliated with the Huntsman Cancer Institute (HCI) of the University of Utah have found in recent lab studies that the experimental drug selinexor…
Anita Lawson was paying the doctor a visit for her annual checkup in 2003 when she was told something that surprised her: she had anemia. She had some issues with…
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