“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
Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel
A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions. In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical… Continue reading Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel
A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn
Did you know we now have more than 30,000 members in our fibromyalgia community? In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009. She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and… Continue reading A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn
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
New Efforts Underway to Improve Care for Veterans
With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes. CAMBRIDGE, Mass. — Jan 22, 2013 — Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with… Continue reading New Efforts Underway to Improve Care for Veterans
Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman
Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor… Continue reading Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman