In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…
News
A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans. The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by…
Recent Posts
- Inflammation of the pancreas may trigger aHUS, boy’s case shows
- Patients need more help to pay for rare disease treatment
- Man’s psoriasis triggers kidney failure, aHUS in rare overlap
- How inflammation from multiple conditions led to an eye emergency
- Early treatment critical in aHUS to prevent lasting kidney damage
- I struggle daily with deconditioning from my multiple illnesses
- Complement inhibitors show edge over plasma at stopping aHUS relapses
- Boy’s kidney issues resolve after Soliris treatment: Case report
- I’m learning to say, ‘There’s always tomorrow’ when I’m feeling guilty
- Rare aHUS after kidney transplant successfully treated with Soliris