When you’ve been experiencing new symptoms or symptoms that have continued to get worse, going to the doctor can be nerve-racking. You may have even been a victim of medical gaslighting that is causing you to avoid going to the doctor. Or maybe you are scared of sharing such personal information about yourself with a… Continue reading 7 Ways to Feel Confident About Being Your Own Health Advocate
Tag: advocacy
The 2017 healthcare policy roller coaster ride — and what’s around the bend
It’s been a year of wild ups and downs related to the proposed U.S. healthcare policy changes and unknowns around the Affordable Care Act (ACA or “Obamacare”), Medicare and CHIP (an insurance program for kids). See a legislative recap and what could be next. 2017 ACA repeal efforts recap Having trouble keeping track of what… Continue reading The 2017 healthcare policy roller coaster ride — and what’s around the bend
PatientsLikeMe names 2018 Team of Advisors
CAMBRIDGE, Mass., December 14, 2017—PatientsLikeMe has named 13 members to its 2018 Team of Advisors, a patients-only group that collaborates with the company on new research and product development, advocates on behalf of patients, and provides real-world perspectives to industry and PatientsLikeMe partners. “This is now our fourth Team of Advisors, and its members… Continue reading PatientsLikeMe names 2018 Team of Advisors
Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”
Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public. Then came the facemasks. The model, who hails from New Orleans but… Continue reading Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”
How to be your best health advocate
PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your… Continue reading How to be your best health advocate
“Always know that you are not alone.” Member Debbie shares about life with PTSD
As a “happily married mom of three and grandmother to four,” Debbie works each day to remain active and positive, filling her time with the things she loves, like crocheting, baking and helping others to see there is a light at the end of the tunnel. “I try very hard each day to stay… Continue reading “Always know that you are not alone.” Member Debbie shares about life with PTSD
Meet Laura from the PatientsLikeMe Team of Advisors
We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus. Laura has spoken before the FDA, regularly blogs about IPF on various… Continue reading Meet Laura from the PatientsLikeMe Team of Advisors
Meet Christel from the PatientsLikeMe Team of Advisors
We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made… Continue reading Meet Christel from the PatientsLikeMe Team of Advisors
PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes
CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes. PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement… Continue reading PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes
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