Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by […]
Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to
PatientsLikeMe members to be highlighted in patient empowerment webinar Read More »
When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was
The Patient Voice- MS member Jackie shares her story Read More »
Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but
After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school. “In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have
The Patient Voice: Garth shares his cancer story for 24 Days of Giving Read More »
Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey
We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about
Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called
So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer. About Becky (aka Rebelor) Becky is a former family nurse practitioner,
Getting to know our 2014 Team of Advisors – Becky Read More »
Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer, Expand Reach for Research Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the
LUNGevity Foundation and PatientsLikeMe Unite for New Partnership Read More »
