Patient Power, la organización que empodera a pacientes de cáncer a través del conocimiento sobre su enfermedad, está ya trabajando en Europa, con equipos en España y en el Reino Unido liderados por Andrew Schorr (@AndrewSchorr), fundador de la organización y residente en Barcelona desde hace 3 años. Hace unos meses Patient Power lanzó el portal europeo www.patientpower.eu, que contiene entrevistas en vídeo a especialistas médicos en varios tipos de cáncer, hablando de novedades en tratamientos o avances conseguidos en investigación. También hay vídeos de pacientes que pueden inspirar a personas que comparten la misma enfermedad. Los vídeos pueden verse...

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Daniel in the blue shirt with his family The past couple of weeks, my Facebook newsfeed has been filled with friends and relatives dumping buckets of ice water over their heads as they participate in the ALS Association's "Ice Bucket Challenge,” a grassroots and viral approach to raise awareness of a rare disease and to boost fundraising. As you probably know, it has taken on an unexpected momentum of its own and brought tremendous benefits to the effort. I have read that the Ice Bucket Challenge has helped the ALS Foundation raise over $40 million when they raised less than $2...

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Actor and Comedian Robin Williams. Photo: USA Today. We were all shocked by the sudden loss of actor and comedian Robin Williams. Just today I had breakfast with an old friend from Marin County, California. She went to high school with Robin and would run into him often in her home town of Tiburon. People in that area knew him and his family. I even once attended a party with his mother. But whether you lived in the Bay Area or not, Robin Williams' death too soon seemed personal, as he made us laugh for so many years. Last night,...

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Patients connecting at a recent in-person forum It has become abundantly clear that patients with cancer find great value in knowing they are not alone and having active dialogue with other patients. I know it helped me back in 1996 when I was diagnosed with chronic lymphocytic leukemia and continues to help me today. But I am in a great spot in communications and get to meet other patients all the time. Many others hardly know anyone else. That’s why we are stepping up our efforts to connect Patient Power audiences with each other, per condition. We are doing this...

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Lugano, Switzerland, 25 July 2014 The European Society for Medical Oncology (ESMO), the leading pan-European association representing medical oncology professionals, has expressed concern that the proposed EU General Data Protection Regulation [1] could make cancer research impossible and add a significant burden to both doctors and cancer patients. The proposed wording of the regulation stipulates ‘explicit and specific patient consent’, meaning that researchers would have to approach patients every single time research is planned in order to consult their data or use tissue samples stored for research purposes. “Hope for patients facing a life-threatening disease like cancer is based on...

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Dr. Richard Pazdur, director of the Food and Drug Administration's cancer drug office I gotta be fair to Dr. Richard Pazdur, the king of cancer drug approvals (or rejections) at the FDA. I have been sharply critical of him in the years past when we have watched niche, but seemingly useful, proposed new drugs go down in flames at his hands. I was worried. But now it seems a combination of better science, meticulous studies from drug companies, great support from patients and advocates, and yes, a kindler/gentler Dr. Pazdur and the FDA, has all led to quicker drug approvals –...

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La doctora María Blasco, directora del CNIO, recibió a Patient Power justo antes de su conferencia inaugural en el Congreso Anual de la Biotecnología, organizado por la Asociación de Biotecnólogos de Catalunya y promovido por la Federación Española de Biotecnólogos. Blasco nos explicó las líneas más prometedoras en investigación del cáncer. Teresa Bau. ¿Qué le parece la dirección que está tomando la investigación sobre cáncer? En los últimos 10 años se ha profundizado en la secuenciación del genoma del cáncer. Dos tumores que tienen un diagnóstico idéntico pueden tener alteraciones genética diferentes. Por esto es importante estratificar a los pacientes y poder...

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Do you know any Yiddish, the eastern European Jewish dialect? Words like chutzpah (audacity), schlep (haul or carry something heavy), and just maybe a third schmooze (talk intimately and cozily)? You probably have heard these words before as the media uses them all the time. Now I am going to apply "schmooze" to cancer patients getting together. Some of us with chronic lymphocytic leukemia, CLL, are getting together in a couple of weeks, on Saturday, July 26th at the Fred Hutchinson Cancer Research Center in Seattle. Audience members schmoozing at a recent event We'll have a five-hour “town meeting” where...

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As you know, I am a two-time cancer survivor, having been diagnosed with chronic lymphocytic leukemia (CLL) in 1996 and myelofibrosis (MF) in 2011. Thankfully, the CLL remains in deep remission, and the symptoms of MF are well controlled with a new, targeted therapy, ruxolitinib. I am living a full life. Two years ago, my wife, Esther, and I decided to move from suburban Seattle (Mercer Island, Washington) to Barcelona, Spain. We wanted to become “global citizens” and also see if we could foster patient empowerment in Europe. That’s a work-in-progress. Before we left, we spent a couple of weeks...

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Myeloma UK is the only charity in the UK dedicated to myeloma, a treatable but currently incurable bone marrow cancer. Myeloma UK helps myeloma patients live longer and with a better quality of life by accelerating the discovery, development of and access to new treatments, while helping patients and their families cope with everything a diagnosis of myeloma brings. A short video about Myeloma UK, the only UK charity dealing exclusively with myeloma. http://www.myelomatv.org.uk/

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August 2014
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