Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team… Continue reading Recapping with our Team of Advisors!
Tag: 2014
Getting to know our Team of Advisors – Kitty
Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand… Continue reading Getting to know our Team of Advisors – Kitty
Getting to know our Team of Advisors – Letitia
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
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
2014 recap – a year of sharing in the PatientsLikeMe community
Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys… Continue reading 2014 recap – a year of sharing in the PatientsLikeMe community
Raising awareness on Veteran’s Day
Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military. Like many others who are living with chronic conditions, the injuries our military men and women sustain… Continue reading Raising awareness on Veteran’s Day
PatientsLikeMe (mid-year) news report
We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights: In the news Innovators in Health Data… Continue reading PatientsLikeMe (mid-year) news report
Uniting for hope on Rare Disease Day 2014
Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it… Continue reading Uniting for hope on Rare Disease Day 2014