10 posts from September, 2013

Epilepsy “Rescue Medication” Survey results are in

Posted September 13th, 2013 by

PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures.

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Has there been any 24-hour period in the last 12 months when you experienced multiple seizures, despite taking your daily anti- seizure medication?

 

We’d like to thank the more than 500 PatientsLikeMe epilepsy members who participated in the survey and got us to our community goal for the study. And as promised for reaching our goal, we’ve donated $2,500 to the Epilepsy Foundation for further research.

At PatientsLikeMe, we know every piece of data, no matter how small, helps paint a better picture of what it’s like to live with a condition like epilepsy. Your contribution will help other patients learn more all while advancing medical research. Thanks for your contribution.

Click here to download the complete survey results.


Patient-focused organizations join forces to build awareness and participation

Posted September 10th, 2013 by

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives.

Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are both thinking out of the box to help patients get what they need in today’s challenging healthcare climate.

Cures Within Reach (www.cureswithinreach.org) is dedicated to saving lives of patients with both complex and rare conditions by sourcing, funding and stewarding research that repurposes FDA-approved drugs, devices and nutriceuticals.  Anecdotally described as “teaching old drugs new tricks,” companies and research institutions rarely embrace this methodology due to low profit potential, while the potential for creating effective and affordable cures or treatments for patients is very high.  Ideas for these projects come from researchers, clinicians and sometimes patients themselves.

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care.

The initial partnership will consist of cross-marketing programs to drive awareness and participation.  “Cures Within Reach is leading the way in a unique research model that makes a tangible difference for patients today.  We are happy to connect with an organization whose work so directly supports our patient community,” says PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach, shares that moving forward, CWR will “find collaborations with PatientsLikeMe and their powerful patient community that not only increase awareness, but also ultimately strengthen each organization’s research work and patient impact.”

To learn more about PatientsLikeMe, visit www.patientslikeme.com

To learn more about Cures Within Reach, visit www.cureswithinreach.org