A $5 million charitable donation from the Isabella Santos Foundation has been committed to the Atrium Health’s Levine Children’s Hospital, reports FinacialContent. It will be used to establish The Isabella…
Researchers have found that forms of certain genes can influence how successful a blood and marrow transplant is, reports Roswell Park. This has important implications for understanding patient outcomes and…
According to a story from The Irish Times, Noreen O'Carroll can vividly remember when she first received the news that she had been diagnosed with idiopathic pulmonary fibrosis. It was…
As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is not strictly a religious sentimentality about…
An online patient survey has found that 96% of pulmonary fibrosis patients, and 93% of cystic fibrosis patients, support being able to monitor their lung function at home between visits…
There is a growing consensus that patients need to be more included in the medical field, reports PCMA Convene. Over the last ten years increasing numbers of organisations have moved…
According to a recent study, cognitive behavioral therapy may be the solution for patients with misophonia, The Daily Beast reports. Misophonia, which literally means “hatred of sound,” is a rare…
It's a parent's worst nightmare-- a rare disease that strikes early in life, and without treatment, can cause a patient's death. Tyrosinemia type 1 (TYR1), is a form of a…
Eva-Rose Sturgess is eighteen months old. She faces a disease for which there is no known cure: leukodystrophy. Her parents felt like their world came apart at the seams when…
The country singer, songwriter Gavin DeGraw has released a video to raise awareness for pancreatic cancer as part of an on-going campaign by the Lustgarten Foundation, reports PR Newswire. In…
According to a story from Charcot Marie Tooth News, a small subdivision of the National Institutes of Health (NIH) is leaning into its role to assist with research into rare…
Michael Conway, 51, was diagnosed with Adrenoleukodystrophy (ALD) two years ago. Since then, he has been raising awareness for the rare and potentially life-shortening condition. He wants to let people…
According to a story from PR Newswire, the pharmaceutical company Therapix Biosciences recently announced the results of a Phase IIa study for its drug candidate THX-110. The therapy is indicated…
A Michigan based initiative called “Let MI Doctors Decide” is picking up steam with many major healthcare organizations. As support continues to grow, “Let MI Doctors Decide” seeks to improve…
According to a story from medpagetoday.com, researchers are beginning to realize that symptoms of pediatric spondyloarthritis present themselves in a distinct way when compared to the symptoms that are experienced…
Collaboration often leads to greater success. Two advocacy groups, the Hereditary Neuropathy Foundation and True Reply have done just that to benefit patients with Charcot-Marie-Tooth disease. Their combined efforts focus…
According to a story from adc.net.au, an innovative new cancer treatment regimen is responsible for doubling survival rates for patients with certain types of rare, difficult-to-treat blood cancers. This combination…
The U.S. Food and Drug Administration (FDA) have just approved a drug called Afinitor DISPERZ for treating tuberous sclerosis complex-associated partial onset seizures, reports PR Newswire. This makes it the…
A drug being developed to treat chronic kidney disease in Alport syndrome is showing promising results in patients in an on-going phase 2 clinical trial. Patients have shown an increase…
It is international Pompe Day! “Together we are Strong” Today is meant to help create awareness for the Lysosomal Storage Disorder Pompe Disease, which is both rare and underdiagnosed. Pompe…
On April 8th in Mystic Connecticut there was a special event. Over one hundred women, men, and children gathered in the Mystic ballroom to have their heads shaved! But why…
A potential Zika treatment exists as a result of drug repurposing. The drug originally treated Hepatitis C. A new study highlights its potency against the microcephaly-causing Zika virus. Keep reading…
According to a story from femalefirst.co.uk, Jas Shaw of the electronic music project Simian Mobile Disco was recently diagnosed with AL amyloidosis. The group was planning a tour of the…
Hope everybody is enjoying the warm weather! This week we have patient stories about a woman with MS who started a support group and a rare mom who took issues…
According to a story from QQ Malaysia Online, patient advocates are looking for ways to raise awareness of rare diseases in Malaysia and get help to forgotten patients that desperately…
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