When we kicked off 2013 back in January, we shared that what inspires everyone at PatientsLikeMe to live better is YOU. We also renewed our promise to continue putting patients first, and a couple days ago we posted on the blog about just some of the ways the community has continued to change healthcare for good by adding their voices to real-time research and sharing personal health experiences.
In just this last year, PatientsLikeMe…
- worked with the Alkaptonuria (AKU) Society to create the first open registry for AKU patients
- met up with four members at the World Parkinson’s Conference to learn more about their experiences face to face
- collaborated with the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE) and biopharmaceutical company UCB on a study to better understand what factors improve health outcomes for veterans living with epilepsy
- showed how we can get the patient voice front and center during Sally Okun’s TEDMED talk
- partnered with Aetna to help their members improve the way they live with various health conditions
- created the world’s first open research platform with an awarded grant of $1.9 million from The Robert Wood Johnson Foundation (RWJF)
- brought the ‘patients as innovators’ idea with Rishi Bhalerao to TEDx Springfield
- worked with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF)
- unveiled a new tool to match patients with clinical trials worldwide
- hired its first CEO (Martin Coulter) since its founding in 2004
- PatientsLikeMe team members Dave, Sally, Kim and Jesse shared their background, and Maria talked about her journey with Crohn’s Disease
- Dr. Jerry Bagel and Dr. Steve Feldman spoke about psoriasis and treatment
- Jamie Heywood and RWJF’s Paul Tarini talked about creating an open-access platform for patients
- Michael Evers and Ken Getz spoke about partnering with patients
- Ben Heywood and several pilot researchers discussed the Open Research Exchange