You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
It’s World Kidney Day. How Are Your Kidneys?
Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health. For example, did you know that it’s our kidneys’ job to remove toxins… Continue reading It’s World Kidney Day. How Are Your Kidneys?
Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”
Want to connect with and learn from psoriasis patients like you? Join PatientsLikeMe Now! (It’s free) Welcome to the sixth installment of our “Spotlighted Blogger” series. So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived… Continue reading Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”
What Do You Know About Multiple Sclerosis?
March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves. This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the… Continue reading What Do You Know About Multiple Sclerosis?
Rare Disease Day: Together, We Can Do More
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a… Continue reading Rare Disease Day: Together, We Can Do More
A Peek at the February Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up… Continue reading A Peek at the February Newsletter for Members
E-Patient Dave’s Top Internet Resources
We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer. Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend. Case in point, our President and Co-Founder Ben Heywood was on… Continue reading E-Patient Dave’s Top Internet Resources
Information Wants to Be Free
(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.) But when it comes to clinical trials, can we afford to let it be? “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant… Continue reading Information Wants to Be Free
How Heart Attack Warning Signs Differ in Women
A heart attack is unmistakable, right? Not exactly. And especially not if you’re a woman. We kicked off February by recognizing National Wear Red Day and sharing a hilarious video created by actress Elizabeth Banks for American Heart Month. In the short piece, a harried working mother begins having strange symptoms one morning, including tightness… Continue reading How Heart Attack Warning Signs Differ in Women
Behind Every Piece of Data Is a Patient
(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research… Continue reading Behind Every Piece of Data Is a Patient