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...

Read Blog

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 –...

Read Blog

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...

Read Blog

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...

Read Blog

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...

Read Blog

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/

Read Blog

In this new video, Andrew Schorr is reporting in Milan at EHA 2014. The atmosphere is upbeat and positive with over 10,000 clinical people and researchers from all around the world, sharing information and latest advancements in the treatment of blood-related cancers. "Knowledge can be the best medicine of all." - Andrew Schorr

Read Blog

AJ Halavacs at Moffit Cancer Center in Tampa   By Carol Preston, CLL Advocate and Patient Power Contributor AJ Halavacs of Fort Lauderdale, Florida died unexpectedly earlier this month.  Since learning of his death a few days ago, I have been shaken to my core. I had met AJ only briefly on April 12 at Moffitt Cancer Center in Tampa, FL.  But what an impression he made!  With his big personality and his story. AJ was among the patient guest speakers at a CLL Town Hall meeting at Moffitt, sponsored by Patient Power—the educational symposium featured two CLL specialists and...

Read Blog

El sábado 21 de junio Patient Power celebra su primer evento europeo. Se trata de una reunión para pacientes de leucémia linfática crónica (LLC) y sus familiares en Cambridge (Cambridge City Hotel) que Patient Power organiza conjuntamente con la asociación CLL Suport Association (CLLSA). En el encuentro, que tiene el apoyo de la Fundación Internacional de Mieloma, se dará a conocer como cambiará en un futuro próximo el tratamiento de la enfermedad y los ensayos clínicos que se están haciendo con nuevos medicamentos. CLL Suport Association es una organización liderada por pacientes que apoya a pacientes de CLL y sus...

Read Blog

In this new video, Andrew Schorr is reporting in Milan at EHA 2014. The atmosphere is upbeat and positive with over 10,000 clinical people and researchers from all around the world, sharing information and latest advancements in the treatment of blood related cancers. "Knowledge can be the best medicine of all." - Andrew Schorr  

Read Blog
July 2014
S M T W T F S
< Jun   Aug
  1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29 30 31  

Archive

more reset

Page last updated on March 7, 2017