Happy Back 2 School Time! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributors Denise Crompton and Tom…
According to a story from Tablet Magazine, Emily Kramer-Golinkoff is a 33 year old woman who is living with cystic fibrosis, a rare disorder that primarily affects the lungs. Emily…
According to a story from sciencemag.org, Huntington's disease can often feel like a curse. That's how it felt for Michelle Dardengo as she watched the disease consume her father. At…
According to a story from BioSpace, Martin Pharmaceuticals' Livantra appears to be on something of a roll. Earlier in the year, the drug received Orphan Drug designation for the treating…
According to a story from kentlive.news, Lucy Frost of Tumbridge Wells is doing everything she can in an attempt to get the NHS to provide her son with the medication he…
The United States FDA has awarded Fast Track Designation to the investigational drug AVB-S6-500 for the potential treatment of platinum-resistant recurrent ovarian cancer. You can find out more detailed information…
Just this morning, the family of American hero and political icon John McCain announced via a statement he will cease treatment for the aggressive and rare form of brain cancer,…
No one likes to be judged. However, during the many years that I've been involved with rare diseases families, I've learned that some people are very quick to judge parents…
According to a story from Nevada Public Radio, in the early 1980s, Lisa Iezzoni was a medical student at Harvard University. Around that time she received a diagnosis of multiple…
According to a story from healthnewsdigest.com, an important source of data related to brain cancer has just become widely available to global researchers. This dataset was supported by Georgetown University,…
If you suffer with anxiety, you know just how crippling it can be. Anxiety* is actually a natural response to our environment that is designed to protect us from danger.…
According to a story from Newsweek, when 25 year old Rebecca Griffiths first knew that her son Reggie, now aged two, was diagnosed with Sanfilippo syndrome, she had to face…
According to a story from thesun.co.uk, Jade Baldwin, 35 had been dealing with mysterious itchiness for years before she sought medical attention for it. While her legs were itchy, there…
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