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?…
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A recent article in Forbes highlights a study on diagnostic performance published in The Lancet Digital Health. The study represents the first review to compare the diagnostic accuracy of deep…
According to a story from Ankylosing Spondylitis News, a recent study has found that moxibustion, a form of heat therapy, could provide short-term benefits for patients with the rare disease…
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…
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…
According to a story from BioSpace, a global collaborative called the Trajectory Analysis Project recently released a study that utilized the North Star Ambulatory Assessment (NSAA), a recently developed measurement…
According to a story from PR Newswire, the biopharmaceutical company Clene Nanomedicine, Inc., has issued an announcement in regards to its Australian subsidiary. This subsidiary has been awarded a grant…
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…
According to a story from the Cystic Fibrosis Foundation's Community Blog, the internet allows for access to a trove of knowledge and information literally at your fingertips. This has naturally…
A Phase 3 trial for Cushing syndrome led by Maria Fleseriu at Oregon Health and Science University has just been completed. It examined a new investigational treatment called levoketoconazole. About the…
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…
Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign…
Geisinger Health System is based out of Pennsylvania. They have recently initiated a novel program that has goals to make DNA sequencing a standard part of routine clinical care. Next…
According to a story from birminghammail.co.uk, eight month old Archie was diagnosed with a serious rare disorder called Pompe disease. With his life in danger, the infant faces 220 mile…
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To…
According to a story from derbytelegraph.co.uk, four year old Michal Myslicki, who was born with Batten disease, will soon get access to a critical treatment that will prolong his life.…
According to a story from the Cystic Fibrosis Foundation's Community Blog, the internet allows for access to a trove of knowledge and information literally at your fingertips. This had naturally…
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…
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…
Web-based Living Mindfully With Chronic Illness Support Group 2nd Tuesday of each month This is a support group for rare disease patients dealing with chronic illness who are seeking to…
According to a story from Wales Online, Samantha Josey's childhood was characterized by unpleasant symptoms and health problems, resulting in hospital visits and bouts of serious illness. Her symptoms included…
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Waukesha Wisconsin Police Captain Dan Baumann recently held a news conference that was described in an article published in Scientific American. Captain Baumann said that parents of a teenage boy showed…
The Center for Chronic Illness is a nonprofit group that is based out of Seattle, Washington. The goals of this organization include the provision of support and educational resources to…
With advocacy organizations gaining traction, sometimes patients with rare diseases may have a handful of options to choose from. Some patients may be quick to join patient advocacy groups…
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