advocacy

Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!) “I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two

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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

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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

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Jokiva Bellard's lupus diagnosis

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

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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

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“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

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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

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Touched with fire: Reframing the dialogue of bipolar

We’ve talked a lot with new PatientsLikeMe member Paul, diving into issues like getting a diagnosis, management and coping, and overcoming stigma.  Now, Paul is sharing how he’s trying to change the conversation about bipolar through his debut feature film, Touched with Fire. Here he talks about framing Touched with Fire as a love story because in a condition defined

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