Precision Medicine for Me Aims to Give All US Lung Cancer Patients Access to Next-Generation Tumor Testing

Unique collaboration announces new program to tackle inequality in cancer care   “Precision medicine with personalized outcomes is the future, and getting this information and access into the hands of patients now could give them years of good living,” said patient advocate Janet Freeman-Daily   A unique consortium of patient organizations, advocates, startups, and leaders in the pharmaceutical industry today announced the launch of Precision Medicine for Me, a program dedicated to providing support to patients who want access to the best ...

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Patient Empowerment Foundation partners with HIMSS to join efforts in empowering patients with technology

e-Patient Christine Bienvenu will be a Keynote speaker at HIMSS eHealth Week The Patient Empowerment Foundation (PEF) and HIMSS have signed a partnership agreement with the goal to empower patients to achieve better care with the help of technology. HIMSS is a global not-for-profit organization focused on better health through information technology (IT). Both organizations will join efforts to promote patient empowerment and to improve the visibility of their work. Patient Empowerment Foundation Board of Trustees member, Christine Bienvenu (@SuissePatiente), a breast ...

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“We can’t design health policies without including patient values”

Marie Ennis-O'Connor (@JBBC) got involved in patient advocacy because nobody informed her about how she could preserve her fertility while having quimiotherapy to treat her breast cancer. Today is a passionate advocate and one of the members of the Patient Empowerment Foundation Board of Trustees. She is aware of the enourmous potential that digital offers to patients and strongly believes that "the patient's input holds the key to success in healthcare". Marie publishes her insights in the blog Journeying Beyond Breast Cancer. In this interview she explains how she became ...

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My patient experience for the Patient Empowerment Foundation – Christine Bienvenu

In hindsight, I can honestly say that my ePatient advocacy started in 2008, when my eldest son was diagnosed with Asperger's Syndrome. With Switzerland rather behind (at the time) in its knowledge about - and treatment of - Asperger’s, I could only find information and communities online that was based in North America. With absolutely nothing like it available here in Switzerland, I decided to create an online platform; today, we are some 300 members who care, share, and support. Our son is thriving in the mainstream schooling system, thanks to our advocating, as ...

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Leveraging Technology to Engage Patients

Significant progress is being made in a number of cancers and serious chronic illnesses. In many areas scientists and clinicians are excited about what is emerging for patients and what may soon lie ahead. Patients and family members want that information. It gives them hope. And they don’t want to feel alone. But too often in European countries and many others patients ARE alone. It doesn’t have to be that way. Today’s communication’s technologies and developing improvements can quickly build patient communities and help patients have the right information at the ...

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What Do Patients Want From Pharma?

That is the question that some of the ePatients invited to the Eyeforpharma conference that took place in Barclelona from March 24th to 26th answered while hundreds of executives from the pharmaceutical industry were present. The conference had sessions dedicated to patients (Patient Engagement Track), that featured ePatients like the Founder of Patient Power and two time cancer survivor, Andrew Schorr (@andrewschorr) and his wife, Esther, Jack Whelan (@jackwhelan), diagnosed with a rare type of blood cancer (Waldenstrom Macroglobulinemia), Nuria Zuniga (@tulupus), ...

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Spotlight on Patient Power: Celebrating Partnerships in Cancer

I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report some instances now when groups are working together as true partners, and I want to call them out for credit. Over the next weeks and months, Patient Power has plans to produce a number of “town meetings” for patients and care partners affected by ...

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I Am Not a Runner

It is not uncommon for households, especially households that have children, to experience health issues on a somewhat recurring basis. Let's face it, if you've got kids in school, you are going to run face first into the revolving door of cold bugs, viruses and assorted maladies. Such was the case in our typical home consisting of Mom, Dad, two daughters and two regal felines. Partly out of sarcasm and mostly out of practicality, I established an almost impossible rule for our home: only one health care crisis at a time! The rule was mostly ignored. Chicken pox, colds, ...

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Immuno-Oncology – The Challenging Road Ahead

Experts say there is tremendous promise in stimulating a patient’s own immune system to fight their cancer. A few new drugs are already on the market in this area for conditions like advanced melanoma and some subtypes of lung cancer. We have a town meeting discussing this for lung cancer on March 7th in Tampa and a melanoma one on March 28th in Phoenix. In blood cancers, hematologists also see great promise for this approach as we heard from many at the recent American Society of Hematology meeting. And, earlier, Dr. Oliver Press spoke to me about it in lympho...

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Spotlight on LUNGevity: Cancer and Stress

(Editor's Note: LUNGevity is one of our esteemed partners. This leading organization has for mission to make "an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.")   Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. A ...

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