Desde que Andrew Schorr (@AndrewSchorr), fundador de Patient Power, está teniendo cobertura en la prensa española, varios pacientes con cáncer de este país se han dirigido a Patient Power preguntándonos cómo podemos ayudarles. Os recomendamos que pongáis en práctica el lema de Patient Power: “El conocimiento puede ser la mejor medicina” (“Knowledge can be the best medicine of all!”).  Y, como dice Andrew Schorr en a entrevista publicada en el periódico Ara (en catalán) de Barcelona: “Dile a tu familia que no llore y busca información”. Así que aquí tenéis unos recursos en donde podéis encontrar información sobre vuestro tipo...

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View along my 6-day camino with new friends in France Last year, my wife, Esther, and my 20-year-old-daughter, Ruthie, took 15 days and walked along Spain’s famous “Camino de Santiago de Compostella.” This is the walk Catholic pilgrims have taken for hundreds of years from France, across Spain, and to the Atlantic coast. These days, most people who do it are not Catholic but rather walking as part of their own thoughtful journey—a break from the travails of daily life. I was envious of Esther and Ruthie’s camino (camino means "path" in Spanish). And while I met them for a...

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“Recibí la medicina del mañana, hoy. Si me hubiera esperado al mañana ya no lo podría contar. Me convencí aún más de que el periodismo y la investigación salvan vidas”. Andrew Schorr, fundador y líder de Patient Power, explicó al periodista Lluís Amiguet de La Vanguardia (Barcelona) como acceder al conocimiento más avanzado sobre su enfermedad le ha salvado la vida dos veces. En la entrevista (sólo abierta a suscriptores), publicada en “La Contra”, uno de los espacios de entrevistas más leídos en España, Schorr hizo un repaso a su vida y explicó como ha conseguido sobrevivir a dos cánceres:...

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Patients meeting one another at an in-person event produced by Patient Power for the Patient Empowerment Network and City of Hope near Los Angeles As you know, I beat the drum for what’s becoming a "patient empowerment movement," especially among cancer patients. And more and more of us are living longer and want to live better. You would think the medical industry would want to support our efforts to be informed and be in control and do it on a sustained basis. But, unfortunately, they haven’t caught up with our almost daily thirst for new information and expectations that our...

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El 23 de abril es el Día Internacional del Libro y nuestro primer post en español en el blog de Patient Power lo queremos dedicar a daros a conocer libros de divulgación que acercan el conocimiento científico sobre cáncer. Se ha escrito muchísimo sobre esta enfermedad pero por desgracia existen numerosas obras que hablan de cáncer que carecen de rigurosidad y que tienen un objetivo puramente comercial. Como organización que acerca el conocimiento científico sobre cáncer a los pacientes, Patient Power ha realizado una selección de obras que pueden ayudar a obtener una mejor comprensión de la enfermedad y que...

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I was reading an opinion piece by David Brooks in today’s New York Times and it clarified for me a theme I wanted to write about. Brooks wrote about the transformative effect of suffering in an age where everyone is pursuing happiness. I got to thinking about the suffering that comes with illness. When it is serious and protracted, it changes you. I have heard that so many times from cancer survivors. I know in my case, living with cancer since 1996, I have experienced it in my own life and since then I have become what I call “Andrew...

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In February 2014 Patient Power, a leader in independent online video programs for cancer patients, conducted a survey got better understand today’s e-cancer patient. 1,295 patients and caregivers (on behalf of patients) responded within two weeks to the 20 question survey and the results were surprising. They illustrate the broad age groups now seeking information for their condition online, how frequently they look for updates, and how what they learn is a key part of the discussion with their doctor and the resulting treatment plan. Clearly, reliable online sources of ongoing information is what today’s e-cancer patient wants so they...

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Over the next couple of weeks I will be traveling thousands of miles on long-distance flights to connect with other patients, in person. It can be exhausting but it’s energizing too. Like any of us with a compromised immune system (I keep getting chest or sinus infections!) there can be a price to pay for hours in a transatlantic or transcontinental jet, but I continue to think it’s worth it. My personal mission is to help give voice to patients and facilitate the dialogue between patients and medical experts. “Experts” come in many types and their personal stories can be...

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Check out this really powerful and well-made video from the CanCertainty team out in Canada campaigning  for fair and equal cancer treatments for Canadians. They’re saying that cancer patients should not be systematically discriminated against simply because the cancer medicine that is right for them, and that they urgently need, goes in the mouth as an oral drug instead of the arm intravenously. “Universal funding of oral drugs is the right thing to do.”  Just so!  

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I am writing this from a conference of pharmaceutical executives meeting in my hometown of Barcelona, Spain. I was a speaker here at the Eye for Pharma conference trying to drive home the point that the pharmaceutical industry (“pharma”) needs to support, without control, ongoing education programs for patients. I hope the message begins to sink in. For many years “pharma” has spent billions on educating top physicians and researchers, people they call “key opinion leaders” or “KOLs.” These are the people other doctors listen to for guidance. Now it’s time to recognize an increasing number of patients are leaders...

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