You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work. About Letitia (aka Letitia81): Letitia… Continue reading Getting to know our Team of Advisors – Letitia
Tag: sharing
Getting to know our Team of Advisors – Charles
We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors. About Charles (aka… Continue reading Getting to know our Team of Advisors – Charles
Getting to know our Team of Advisors – Steve
A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being… Continue reading Getting to know our Team of Advisors – Steve
Getting to know our Team of Advisors – Amy
We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with… Continue reading Getting to know our Team of Advisors – Amy
You can make a difference in April
Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month? Listen to Leslie Chambers, the president and CEO of the American… Continue reading You can make a difference in April
Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at… Continue reading Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care
PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
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… Continue reading PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
The Patient Voice: Garth shares his cancer story for 24 Days of Giving
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… Continue reading The Patient Voice: Garth shares his cancer story for 24 Days of Giving
PatientsLikeMe and USF Health collaborate to empower cancer patients
Partnership Marks the First Between the Patient Network and an Academic Health Center CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and… Continue reading PatientsLikeMe and USF Health collaborate to empower cancer patients
Join Garth Callaghan for 24 Days of Giving
Today’s the day we start to re-think what it means to give back, and we want you to come along with us. We’re kicking off 24 Days of Giving – a new campaign that’s all about the health data PatientsLikeMe members selflessly donate and how we can say thank you. Today is also known as… Continue reading Join Garth Callaghan for 24 Days of Giving