2015-2016 Team of Advisors

“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days?  I am feeling great. I’ve had a couple bumps in the road […]

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Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

It’s been quite a year for the 2015–2016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships. Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for

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Patients as Partners: Christel on “finding your tribe”

Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering

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Patients as Partners: Doug on learning about himself through others

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and

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Patients as Partners: How Phyllis is bringing the patient perspective to future doctors

Team of Advisors member Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. In the latest edition of of our Partnership Principles series, she tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program. The goal is to help the next generation

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Patients as Partners: Member Laura on launching a PF support group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community

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Patients as Partners: Allison shares her insight on teaming up with organizations

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See

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Patients as Partners: Cyrena talks empathy and assertiveness

We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page

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Patients as Partners: John and David share their clinical trial experiences

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below,

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Patients as Partners: An open letter from Craig to the “normals”

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes,

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