Patients as Partners: Cyrena on connecting through social media

Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media. In addition to PatientsLikeMe, Cyrena is active on… Continue reading Patients as Partners: Cyrena on connecting through social media

#ChatActChange: empowered to chat, act and make change – together

On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands… Continue reading #ChatActChange: empowered to chat, act and make change – together

Navigating Healthcare on Twitter

More than five years after founder Jack Dorsey sent the very first “Tweet,” Twitter has exploded into a social media behemoth.  Today, billions of real-time Tweets are sent each year about all manner of subjects – including healthcare.  But how in the world do you keep up with all of them? That’s exactly the conundrum… Continue reading Navigating Healthcare on Twitter

The Personalized Medicine World Conference in Photos and Tweets

Last week, PatientsLikeMe Co-Founder Jamie Heywood had the honor of speaking at the Personalized Medicine World Conference (PMWC), a two-day event held at the Computer History Museum in Silicon Valley.  His presentation was entitled “Patient Driven Convergence of Clinical Discovery and Care.”  In recognition of the conference’s venue as well as the role that technology… Continue reading The Personalized Medicine World Conference in Photos and Tweets

Celebrate the Role of Social Media Today

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize… Continue reading Celebrate the Role of Social Media Today

PatientsLikeMe “Express Yourself” Video Contest: Cast Your Vote!

The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos.  Take a look and vote for your favorite! PATIENTSLIKEME VIDEO CONTEST – VOTE HERE There… Continue reading PatientsLikeMe “Express Yourself” Video Contest: Cast Your Vote!

Share Your Data to Untangle ALS!

Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research.  And that’s just what we’re working on. Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in… Continue reading Share Your Data to Untangle ALS!

Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell… Continue reading Tell The World: A PatientsLikeMe Year in Review (Part V – Marketing)

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

Bil:Pil Conference Presentation on PatientsLikeMe

A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in… Continue reading Bil:Pil Conference Presentation on PatientsLikeMe