An interview with epilepsy community member, Blueyedgoddez
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Real-World Patients, Real-World Epilepsy:
PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.
Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy CAMBRIDGE, MA and ATLANTA, GA — (Marketwire – January 26, 2010) — Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning… Continue reading PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.
Exciting New ALS Progression Chart Upgrades
Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements. We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other… Continue reading Exciting New ALS Progression Chart Upgrades
A Year in Review: PatientsLikeMe in 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year! Community MilestonesThis year, the 15+ disease communities… Continue reading A Year in Review: PatientsLikeMe in 2009
PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big… Continue reading PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
Harnessing New Media for Patient Advocacy (Part II)
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August. This time the… Continue reading Harnessing New Media for Patient Advocacy (Part II)
PatientsLikeMe Facing World AIDS Day 2009
Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day. The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their… Continue reading PatientsLikeMe Facing World AIDS Day 2009
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROMEResearchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, MA–October… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
The Patient Voice – Loud and Clear
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. … Continue reading The Patient Voice – Loud and Clear
New Parkinson’s Genetics Engine to Enhance Research Through Shared Data
Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming. That’s why PatientsLikeMe continues to get involved in the research process. With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the… Continue reading New Parkinson’s Genetics Engine to Enhance Research Through Shared Data