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
Category: Patient Experiences
PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions
CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has… Continue reading PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions
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
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
“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant
“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell… Continue reading “Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant
PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS
CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and… Continue reading PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS
RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS
Real-time health learning system will generate health outcome measures that are meaningful to patients and align medical research with patient needs February 25, 2013—Long Beach, CA—PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome… Continue reading RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS
Psoriasis and Bullying
Teasing.Physical violence.Staring.Social isolation.Name-calling. Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up. One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition. Another… Continue reading Psoriasis and Bullying
Aetna and PatientsLikeMe Help Empower Members Through Collaborative Program
HARTFORD, Conn. and CAMBRIDGE, Mass., February 14, 2013 – Aetna (NYSE: AET) and PatientsLikeMe today announced a new program to help Aetna members improve the way they live with various health conditions. Through a one-year pilot program, Aetna is directing its members to PatientsLikeMe so they can connect with others who have the same condition,… Continue reading Aetna and PatientsLikeMe Help Empower Members Through Collaborative Program
Coping with Changes in Physical Appearance
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight… Continue reading Coping with Changes in Physical Appearance