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…
Research into graft-versus-host-disease (GVHD), a condition that can occur after bone marrow transplants, has yielded promising results. A study, reported by BrightSurf, found that a particular group of microRNA molecules involved…
In an effort to better understand patient experiences, researchers at the Massachusetts General Hospital are surveying people with lysosomal storage diseases about how they view their treatments, reports CheckOrphan. The…
Patients with sickle cell disease often face stigma about their need for pain medication because care providers are suspicious of drug abuse, reports The Dallas Post Tribune. Although this is…
Patients with a form of scleroderma called systemic sclerosis are particularly susceptible to developing high blood pressure in their heart and lungs, also known as pulmonary hypertension. A new study…
According to a story from PR Newswire, a recent survey suggests that a greater number of U.S. citizens know about the existence of pancreatic cancer than ever before. This survey…
According to a story from The Telegraph, a team of Chinese and American scientists have used gene editing to create pigs with Huntington's disease. A portion of human genetic material…
According to a story from PR Newswire, the science and tech company Merck recently announced that Mavenclad (cladribine) was recently approved for public use by the UAE Ministry of Health…
A recent study has found that reaching a correct diagnosis can be extremely challenging for people with mitochondrial disease, reports MedicalMalpractise. Patients are likely to have to undergo numerous different…
Now these are the kind of stories we love to read about! Canadian Revée Agyepong is the first adult in Canada to be cured of sickle cell anemia through stem cell…
A proposal by California governor Jerry Brown set its sight on the Discount Drug Program for Medi-Cal patients. A group of healthcare providers, including the Orthopaedic Institute for Children came…
According to a story from scimex.org, a recent data review is calling into question the previously held consensus that common pain medicines such as NSAIDs and paracetamol could make inflammatory…
A new treatment under development has produced promising results in patients with blood cancers and is now being tested in inherited metabolic disorders, reports Financial Buzz. Inherited metabolic disorders are…
Within the last two decades, a type of medicine known as a biologic became popular for the treatment of autoimmune disease such as lupus, or ankylosing spondylitis. The treatments work…
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