Search Results for: transparency

PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

8 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  […]

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Chronic Kidney Disease Woman and Cat

Lessons Learned on a Seventeen Year Journey to Diagnosis

Chronic Kidney Disease, Multiple Sclerosis, Patient Experiences / By

Meet Trisha (@DXMS06) Before Trisha Bordelon, a 69-year-old PatientsLikeMe (PLM) user from Springfield, Missouri, officially received any diagnosis, she was guilty of what many of us in her shoes would do – spend hours going down a rabbit hole of internet searches to try and figure out what was going on with her health. She

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lupus research

What’s New In Lupus Research & Treatments?

2 Comments / Conditions, Lupus / By

Keeping tabs on the latest info about lupus research is no easy task. So we’ve boiled down some highlights and trends in the world of lupus research and drug development — take a peek. Rising areas of research Stem cells – Initial studies have shown that mesenchymal stem cells (MSC) — a type of stem cell that lives in bone marrow, umbilical

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2 immunotherapy treatments in the news: Imfinzi and Keytruda update

1 Comment / Cancer, Conditions, Patient Experiences, Research / By

Two immunotherapy treatments — Imfinzi (durvalumab) and Keytruda (pembrolizumab) — have made headlines recently in relation to lung cancer treatment. What’s the latest? Here’s an update. Expanded FDA approval for Imfinzi The U.S. Food and Drug Administration (FDA) first approved Imfinzi as a bladder cancer treatment in 2017. Imfinzi is marketed by AstraZeneca. In February 2018, the FDA approved

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Want to know more about Radicava (edaravone)? Here’s a snapshot:

2 Comments / ALS, Patient Experiences, Research / By

With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown

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Patient Advocacy: An interview with artist and activist Regina Holliday

Patient Experiences / By

Regina Holliday wears many hats. She’s an artist, activist, speaker and author, and she’s painted hundreds of patient stories on the backs of jackets in an ongoing art project called The Walking Gallery. Through her art, Regina promotes better care, treatment and transparency in healthcare. She’s been an advocate of PatientsLikeMe for quite some time (two

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Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

Patient Experiences, Psoriasis / By

In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances

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