A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. About Lisa (aka lcs) Lisa’s recent work experience… Continue reading Getting to know our 2014 Team of Advisors – Lisa
Tag: patient
“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer
That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview… Continue reading “Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer
“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines
PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his… Continue reading “I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines
“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF
Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to… Continue reading “We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF
Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended… Continue reading Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
The Patient Voice- Epilepsy member Letitia shares her story
What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how… Continue reading The Patient Voice- Epilepsy member Letitia shares her story
“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)… Continue reading “Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
PatientsLikeMe Develops Patient and Scientific Advisory Boards
Company Forms First Member-Based Team of Advisors, Names New Participants to ORE Scientific Advisory Board CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new… Continue reading PatientsLikeMe Develops Patient and Scientific Advisory Boards
“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight… Continue reading “Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
Results! PatientsLikeMe diabetes members share about challenges and concerns
Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the… Continue reading Results! PatientsLikeMe diabetes members share about challenges and concerns