UCB and PatientsLikeMe partner to give people with epilepsy a voice in advancing research | UCB
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UCB and PatientsLikeMe partner to give people with epilepsy a voice in advancing research

  • Unique industry-patient partnership to improve understanding of epilepsy
  • Epilepsy patients will share real-time, day-to-day progress in controlling seizures and achieving treatment goals

Brussels, Belgium and Cambridge, MA - June 15, 2009 - press release - 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.

"UCB has a longstanding commitment to improving the lives of people living with severe conditions," said Roch Doliveux, Chief Executive Officer, UCB. "This partnership is exciting because for the first time, patients will be able to contribute their experiences and real-world data to ongoing epilepsy research."

UCB is the first pharmaceutical company to partner with PatientsLikeMe to launch a patient community. The new epilepsy community will help create a platform for people with epilepsy that will enable UCB to better understand patients, their lives and treatment experiences.

Participants will record their real-time day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help patients, caregivers, researchers and industry learn more about the disease.

"What we're seeing on our site every day is that patients are interested in learning more about their disease" says Ben Heywood, President and Co-founder of PatientsLikeMe. "By joining forces with industry leaders like UCB, we can turn up the volume of the patient voice in companies who are committed to hearing it and working toward better treatments and better care."

Epilepsy is a chronic neurological disorder affecting approximately 50 million people worldwide and between 2.5 and 3 million Americans.[1], [2] An often stigmatized and misunderstood condition, epilepsy can strike anyone at any time, but new cases are most common among young children and older adults. The number of people living with epilepsy in the U.S. is expected to rise as the population ages.[1] There is no cure for epilepsy, though treatments have improved in the last ten to twenty years.[3]

For further information

Lori Scanlon, Marketing & Communications Manager, PatientsLikeMe

T + 1.617.475.3294, lscanlon@patientslikeme.com

Nancy Nackaerts, External Communications, UCB

T + 32 473 86 44 14, nancy.nackaerts@ucb.com

Andrea Levin, Public Relations Manager U.S., CNS, UCB

T +1.770.970.8352, andrea.levin@ucb.com

About UCB
UCB, Brussels, Belgium (www.ucb.com) is a biopharmaceutical company dedicated to the research, development and commercialization of innovative medicines with a focus on the fields of central nervous system and immunology disorders. Employing more than 10 000 people in over 40 countries, UCB achieved revenues of 3.6 billion Euro in 2008. UCB is listed on Euronext Brussels (symbol: UCB).

About PatientsLikeMe
PatientsLikeMe (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's, HIV, and mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia and epilepsy. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.

Forward looking statement
This press release contains forward-looking statements based on current plans, estimates and beliefs of management. Such statements are subject to risks and uncertainties that may cause actual results to be materially different from those that may be implied by such forward-looking statements contained in this press release. Important factors that could result in such differences include: changes in general economic, business and competitive conditions, effects of future judicial decisions, changes in regulation, exchange rate fluctuations and hiring and retention of its employees.


[1.] Epilepsy Foundation. Epilepsy: Just the Facts. March 2008. Accessed at: http://www.epilepsyfoundation.org/newsroom/upload/Epilepsy-Facts-and-Figures.pdf.

[2.] U.S. Centers for Disease Control and Prevention. Epilepsy Fast Facts. March 2009. Accessed at: http://www.cdc.gov/epilepsy/basics/fast_facts.htm

[3.] Brodie MJ, Kwan P. Staged approach to epilepsy management. Neurology. 2002;58 (suppl 5):S2-S8.

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