If you’re a rare disease patient group and you haven’t come across CheckOrphan yet, then go to their website now: http://www.checkorphan.org.
CheckOrphan is a non-profit organization located in Basel, Switzerland, and Santa Cruz, California, that is dedicated to rare, orphan and neglected diseases. It offers users a dynamic platform through blogs, forums, communities and other interactive tools. It also gives you a virtual office space where you can come together from remote locations to work on projects and bring about change and solutions for rare, orphan and neglected diseases.
Co-founded by Robert Derham, an impressive person with a background in medical microbiology, biochemistry and the orphan drug industry, it’s a wonderful place to find out more about rare diseases.
For instance, today Robert posted a video interview with Dr Timothy Cote, the Head of the FDA’s Office of Orphan Product Development.
Most of us rare disease groups tend to find that one of the biggest challenges we face is isolation. Few people are interested in a disease that affects hardly anyone. Aggregating rare diseases into a mass movement is crucial to helping raising awareness. That’s where organisations like CheckOrphan come in: they’re showing that rare diseases are common and are highlighting all the work that’s being carried out.
So go on, check it out now: http://www.checkorphan.org.