Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.
The news release announcing the partnership is below.
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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – June 15, 2009) – Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.
Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.
I’m a 49 yr. housewife with Epilepsy. I have grand-mal seizures. I take Depakote daily, it seems to be the best meds but still dosen’t completely control my seizures. I’m married and have 2 grown children. My daughter had peti-mals when she was in grade school,but outgrew them. I don’t drive because of my seizures,I thought in most states it was against the law to drive unless your seizures are controlled. I feel that people with Epilepsy aren’t heard enough. The disorder needs to be talked about more! It’s a scary stituation when you see someone have a seizure,but you just have to take 1 day at a time and do the best you can. I’d love to have someone to chat with send emails too. Thanks alot and keep the faith!
I am a 36 year old with Epilepsy that has never been under control with any medicine. I had an implant of the vagus nerve stimulator and it has helped. People seem to be scared of someone that has seizures. I say it is probably scary to see someone have one because some people don’t know what’s going one. They would be more scared if they had one. I have about 15 psycho motor seizures a month and it is very hard to live with.You can say it pretty much controls my life. I never had children because I’ve been afraid I would hurt a child.
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