Sometimes, epidemics don’t make headlines. That seems strange, a major health risk causing death to ripple through communities, and yet we're more likely to hear about whats happening with the…
According to a story from the TGen Blog, a simple typing mistake lead to a diagnosis for a boy with an incredibly rare genetic disorder. In fact, this disorder is…
Happy Thursday! It's cold and flu season around our parts, so we hope everyone reading this has dodged the fall viruses! This week, we're sharing a recap of a Global…
According to a story from news-medical.net, the National Institutes of Health (NIH) has doled a total of $31 million on grants this year to 20 different research teams. The goal?…
According to a story from med.miami.edu, an international research consortium known as Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) has just been awarded a renewal grant from…
As originally reported in The Age, Karen Carey, 57, and Connie Severino, 42, were called to the emergency department at St Vincent’s Hospital at the same time. Each were told,…
EPP Erythropoietic protoporphyria (EPP) is a rare disease that causes extreme light sensitivity. This sensitivity is so extreme that being outside is extremely difficult for patients and many only come…
According to a story from abc.net.au, Darren Bullock is getting pretty long in the tooth---at least for a cystic fibrosis patient. He is 44 years old, and his lungs currently…
Check out Part One here! Sean Baumstark and Kyle Bryant, hosts of the 2 Disabled Dudes Podcast, led a panel discussion with Neena Nizar, Onno Faber, and Katie Stevens. Kyle…
Sometimes, rare diseases are so rare that they are just as unique as the individual who has it. One child was suffering from a fatal neurodegenerative disease, and the family…
This week, many cities and regions across the country acknowledged Indigenous Peoples' Day, a day to remember and honor the histories and cultures of Native Americans. The treatment of Native…
The 2019 Global Genes Rare Patient Advocacy Summit was filled with incredible presentations that highlighted steps for progress in research and advocacy organization, provided solidarity for the rare community, and…
As originally reported by EurekAlert, eosinophilic gastrointestinal disorder research will receive a boost with the renewal of a $7.57 million grant administered over five years awarded to the Cincinnati Children’s…
A new joint clinicial investigation has come out with a reminder to patients with primary hyperoxaluria type 2 (PH2) to adherr to the requirements regarding careful follow up proceedings. This…
According to a story from curetoday.com, Betty Strommer had been a breast cancer survivor for years when, in 2013, she was suddenly diagnosed with cancer again. This time, it was…
Gene therapies have huge potential in the field of rare disease. The fact that these therapies could offer a potential cure otherwise fatal diseases has given families incredible hope. Unfortunately,…
According to a story from offspring.lifehacker.com, medical abnormalities and conditions that affect the skin are often something that many of us will notice on our own. Once a skin problem…
A New Collaboration The National Hemophilia Foundation (NHF) is a nonprofit specifically focused on accelerating research for Hemophilia, a rare blood disorder. It was established in 1948 and now has…
Happy October! This week, we're sharing an article on a PKD treatment update. We also have news about a famous singer who shared her rare disease story recently, a piece…
On Friday, internationally renowned singer-songwriter Sia tweeted, "Hey, I'm suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from…
According to a story from news-medical.net, a team of researchers have developed a potential new treatment for polycystic kidney disease (PKD), a rare disorder that ultimately causes organ failure. The…
NASH Nonalcoholic Steatohepatitis (NASH) is a rare disease in which hepatic inflammation and injury to the cells occur as a result of steatosis (hepatic fat accumulation). Severe cases of NASH…
According to a story from Biotech 365, the immuno-oncology company Mateon Therapeutics Inc. has recently announced that the company's investigational product candidate OT101 has earned the US Food and Drug…
By: Teresa Scruton Hereditary Angiodema Abdominal Attacks There are 3 types of Hereditary Angiodema (HAE) abdominal attacks: Lower abdominal - swelling in wall of colon (large bowel), that causes the…
“I have cried a lot more in the last ten years of my life than ever before.” A parental odyssey of rare disease, in two of their three children, and…
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