Tag: PatientsLikeMe

Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey

Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition   CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good… Continue reading Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey

Patient-focused organizations join forces to build awareness and participation

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives. Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are… Continue reading Patient-focused organizations join forces to build awareness and participation

“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments. With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians,… Continue reading The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

PatientsLikeMe creates largest open registry of IPF patients in the world

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community… Continue reading PatientsLikeMe creates largest open registry of IPF patients in the world

PatientsLikeMe selects first pilot users for Open Research Exchange™

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was… Continue reading PatientsLikeMe selects first pilot users for Open Research Exchange™

Raising awareness for psoriasis, all year long.

As many of you out there know, August is National Psoriasis Awareness Month, but it’s not the only time of year that you’re helping shine a spotlight on this chronic, autoimmune disease. This year, we wanted to take a look back at all the ways your community, both inside and out of PatientsLikeMe, has helped… Continue reading Raising awareness for psoriasis, all year long.

Diabetes and stress- What the PatientsLikeMe diabetes community has to say

Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to… Continue reading Diabetes and stress- What the PatientsLikeMe diabetes community has to say

PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100

An MIT-trained mechanical engineer, Jamie entered the field of translational medicine when his 29 year old brother Stephen was diagnosed with ALS, or Lou Gehrig’s Disease. Today Jamie is a chief scientist and architect for PatientsLikeMe. Described by CNNMoney as one of the 15 companies that will change the world, Jamie co-founded PatientsLikeMe to ensure… Continue reading PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100