Search Results for: Patients Included

Getting “Patients Included” right Part II: Planning a patient-centric event

Conditions, Patient Experiences / By

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of …

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Patient Experiences / By

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea …

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Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!

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Looking for ideas for raising more money for an upcoming cancer walk, MS bike ride, or other health-related charity event where you’ll be hitting the streets? Learn more about PatientsLikeMeInMotion! It’s a program that sponsors you and your team as you walk, run, cycle (etc.) with a nonprofit organization to raise funds and awareness for your …

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We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

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Repeal? Replace? Revise? While politicians have spent months debating the details of a U.S. health care plan, a recent poll of 2,755 PatientsLikeMe members has found that patients are largely aligned about components of a strong plan for the country.   “Despite the partisan divide in Congress about what should be included in a health …

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Meeting PF patients where they are

2 Comments / Conditions, Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. …

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World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Conditions, Parkinson's Disease, Patient Experiences / By

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her …

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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

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Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work. What first drew you to working at PatientsLikeMe? Can …

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PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Patient Experiences / By

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs CAMBRIDGE, MA., November 17, 2016—PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them. The new information, which is updated daily and …

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Patients at work: Member Jenny launches online craft shop on Etsy

5 Comments / Bipolar disorder, Conditions / By

  A few weeks ago, we kicked off a new blog series about patients who have started (or are working on launching) their own businesses. We’ll be featuring some enterprising members and learning more about how they manage their health and their career goals at the same time. Today, we’d like introduce Jenny, (jhound), a …

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