Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past. As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still […]
The Joy of Being Helpful Read More »
You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology. Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC. A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa,
Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members. Social Media a Godsend for Patients with Rare Diseases PatientsLikeMe is highlighted as a good example in this Chicago Tribune article. Medical Innovation Needs Silicon Valley Speed, Stat Fast Company cites us for providing “unprecedented
PatientsLikeMe in the News: A Roundup Read More »
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific
The Importance of Open Access: An Interview with Patient Advocate Graham Steel Read More »
Ladies, we know your lives get busy. So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers? You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health
Women’s Health Week: “It’s Your Time” Read More »
In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US). Today we’d like to spotlight one of these lesser-known conditions: multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and
Recognizing Multiple System Atrophy (MSA Parkinson) Read 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
Rare Disease Day: Together, We Can Do More Read More »
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
A Peek at the February Newsletter for Members Read More »
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
E-Patient Dave’s Top Internet Resources Read More »
Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive? One of the speakers to take a crack at that
Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk Read More »
