Her name is Jennifer Payne and if you haven't already read about her on Patient Worthy, she's something of a rare disease revolutionary. Her advocacy work on phenylketonuria (PKU) has…
This isn't the first time Barry Dubois, host of the Australian cooking show, Living Room, has had cancer. Seven years ago, he was diagnosed with plasmacytoma myeloma. It was different the first…
Although Anabelle, a girl from the Phillipnes, is only seven, she has seen some of darker corners of the world. Just two years ago, she was held captive by a…
Sometimes, the only thing a rare disease needs is for technology to catch up with the times and save the day. Recently, this came in the form of three dimensional…
Finding a community is important for everyone -- but particularly if you have a chronic or rare disease. For the approximately 300,000 Americans with scleroderma, there's an active support group…
During a charity event, a proud UK father pushed his daughter on her wheelchair for 21 miles to raise money for her rare disease. Connie Elson is only 9-years-old, but…
Nerves were high last week as the Senate geared up to vote on the bill to overhaul the U.S. tax code. Members of the rare disease community felt particularly vulnerable,…
Leon "Lee" Garfat is a survivor. The young boy was just 4 months old when doctors told his parents he wouldn't live past 2. He had been diagnosed with a…
I want to be Isaiah Acosta when I grow up. The 17 year-old from Phoenix, Arizona was born without a jaw, due to the very rare disease situs inversus, which…
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