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
Category: Patient Experiences
It’s Global Pulmonary Fibrosis Awareness Day!
Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary… Continue reading It’s Global Pulmonary Fibrosis Awareness Day!
“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
Quick poll- taking control of your health
We’re curious about something: how are you taking charge of your health, and how is that changing conversations with your doctors? So, we thought we’d ask in a Quick Poll! [poll id=”17″] [poll id=”18″] [poll id=”19″]
“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a… Continue reading “My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
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