As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
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.
Raising Awareness for Parkinson’s Disease
Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US?[1] April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder. The Parkinson’s Disease Foundation… Continue reading Raising Awareness for Parkinson’s Disease
Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica
Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9. Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started… Continue reading Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica
American Diabetes Assocation Alert Day – Is Today Your Wake-Up Call?
Today, March 26, 2013, is American Diabetes Association Alert Day, so we are doing our part at PatientsLikeMe by putting out our own alert. Are you at risk for type 2 diabetes? Take the American Diabetes Association’s Diabetes Risk Test right now to find out now. One in three adult Americans is estimated to have… Continue reading American Diabetes Assocation Alert Day – Is Today Your Wake-Up Call?
Can Social Media Strengthen Science?
And more specifically, can it be used to collect patient data, raise investment funds, make scientific data more accurate and even allow regular people to access the world of venture capital? This was the provocative question posed to a five-person discussion panel at the 2012 Partnering for Cures conference last fall that included several thought… Continue reading Can Social Media Strengthen Science?
A Traumatic Brain Injury Can Happen to Anyone
Did you know that 1.7 million Americans sustain a traumatic brain injury each year? Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function? March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that… Continue reading A Traumatic Brain Injury Can Happen to Anyone
Attending Partnering with Patients…as a Patient
Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop. Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director,… Continue reading Attending Partnering with Patients…as a Patient
PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide
Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement CAMBRIDGE, Mass. — Mar 13, 2013 — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by… Continue reading PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide
Creating a Revolution at the Nuffield Trust Health Policy Summit 2013
Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS). One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug… Continue reading Creating a Revolution at the Nuffield Trust Health Policy Summit 2013
Partnering with Patients to Improve Healthcare
Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into… Continue reading Partnering with Patients to Improve Healthcare