Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect… Continue reading Recognizing the Rare Disease Community’s Champions of Hope
Category: Rare Diseases
The Joy of Being Helpful
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… Continue reading The Joy of Being Helpful
Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
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,… Continue reading Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
PatientsLikeMe in the News: A Roundup
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… Continue reading PatientsLikeMe in the News: A Roundup
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
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… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
Women’s Health Week: “It’s Your Time”
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… Continue reading Women’s Health Week: “It’s Your Time”
Recognizing Multiple System Atrophy (MSA Parkinson)
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… Continue reading Recognizing Multiple System Atrophy (MSA Parkinson)
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