*  The Powerful and Evolving Role of Patient Advocacy Groups in Orphan Drug Development - Xtalks
This webinar reviews the history of patient advocacy groups in advancing clinical research and examines the evolution of their role in light of recent and pending legislative and regulatory changes in the United States and European Union. Included is a discussion of how patient advocacy groups and industry can join to respond most effectively to these anticipated changes.
  https://xtalks.com/webinars/patient-advocacy-gorups-in-clinical-research/
*  Groundbreaking Book on Patient Advocacy Targets Improved Health Care from the Professional Patient Advocate Institute, New Book...
Rockville, MD (PRWEB) April 15, 2011 -- The Professional Patient Advocate Institute announced today the publication of a new patient advocacy book, Getting
  http://www.prweb.com/releases/2011/04/prweb5250104.htm
*  Patient Advocacy Worshop | EFCCA
Rome, 10-11 November 2017, Regional Patient Advocacy Workshop on Biologics and Biosimilars. Delegates from 15 patient associations representing immune modulated disease groups in the Mediterranean area gathered in Rome from 10-11 November 2017 at the Patient Advocacy Workshop in order to discuss experiences and local best practice around the issues concerning Biologics and Biosimilars.. The workshop was organized by the Global Alliance for Patient Access (GAfPA) in cooperation with EFCCA and forms part of 3 regional seminars that were held throughout this year as a follow up to our main workshop in Barcelona 2016. At the Barcelona workshop more than 60 representatives from a variety of immune modulated disease groups treated by biologic therapies decided to create greater awareness amongst patient communities regarding the issues impacting access to biologic and biosimilar treatments and to provide and improve basic understanding of the science and issues associated with ...
  http://www.efcca.org/en/patient-advocacy-worshop
*  CFS Patient Advocate: January 2010
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.co.uk/2010_01_01_archive.html
*  CFS Patient Advocate: November 2012
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.co.uk/2012_11_01_archive.html
*  CFS Patient Advocate: June 2009
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.com/2009/06/
*  CFS Patient Advocate: June 2009
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.com/2009_06_01_archive.html
*  CFS Patient Advocate: July 2011
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.com/2011/07/
*  CFS Patient Advocate: June 2012
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.com/2012_06_01_archive.html
*  CFS Patient Advocate: January 2014
The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to ...
  http://cfspatientadvocate.blogspot.com/2014/01/
*  NCCN Patient Advocacy Summit
On Thursday, September 23, 2010, the National Comprehensive Cancer Network® (NCCN®) Patient Advocacy Summit convened in Washington, D.C. at the National Press Club. This invite-only Policy Summit was attended by patient advocates, providers, employers, clinician, and industry representatives within the oncology community. These key stakeholders gathered for a day-long session to discuss the current issues that most profoundly affect patient care. The Summit featured a series of panel discussions including representatives from each sector in attendance. Each roundtable was moderated by William T. McGivney, PhD, Chief Executive Officer of NCCN.
  https://www.nccn.org/professionals/meetings/oncology_policy_program/patient_advocacy/2010_patient_advocacy.aspx
*  Patient advocacy groups | Leukaemia CARE
As part of Campaigning and Advocacy, we work with Patient Advocacy Groups making sure that the voices of blood cancer patients are heard.
  http://www.leukaemiacare.org.uk/patient-advocacy-groups
*  Pain burden in patients with aggressive fibromatosis/desmoid tumour (AF/DT): a survey from the French Patient Advocacy Group:...
Introduction Little is known about the frequency, the intensity and the consequences of pain in patients with AF/DT. The French patient advocacy group is frequently contacted by patients and caregivers about the treatment of pain and suspects that this problem is underestimated by physicians.. Methods The association had conducted a survey using a structured questionnaire, made with the help of some algologists and oncologists. This questionnaire aims at assessing the frequency, the intensity (using Visual Analogic Scale - VAS) and the consequence of pain. 233 questionnaires have been sent. Classical descriptive statistics (frequency, 95%-CI, median & extreme values) have been used.. Results We have received 102 questionnaires (44%) from 18 men and 82 women (2 ND) with a median age of 41 (17-85). AF/DT was diagnosed since 7 years (1-36). 73 pts underwent surgery (71.5% [62.8-80.3]). Pain was present in 65 cases (63.7% [54.4-73.0]). The median intensity of pain was 1 (0-8) at the time of the ...
  http://oncologypro.esmo.org/Topics/Palliative-and-Supportive-Care/Pain-burden-in-patients-with-aggressive-fibromatosis-desmoid-tumour-AF-DT-a-survey-from-the-French-Patient-Advocacy-Group-SOS-Desmoide
*  GOP's Senate Healthcare Bill Pits Missouri's Republicans Vs. Major Health & Patient Advocacy Groups
As Republicans in DC finally unveiled their secret bill in the U.S. Senate to overhaul healthcare last week, major health and patient advocacy groups are rushing to raise stark warnings about how the…
  https://medium.com/@MissouriDems/gops-senate-healthcare-bill-pits-missouri-s-republicans-vs-major-health-patient-advocacy-groups-2129784c0bbf
*  Patient Advocacy Group Needs Help to Counter 't4' Only Therapy. | Metabolism.com
A patient advocacy group in the UK is fighting for recognition of combination therapy (t4 plus t3) to treat hypothyroidism (low thyroid levels). They are asking
  http://www.metabolism.com/2010/07/25/patient-advocacy-group-counter-t4-therapy/
*  HVA Patient Advocacy Program
The HVA Patient Advocacy program is a partnership between CSSW and Huron Valley Ambulance (HVA) to provide case management intervention for individuals who make frequent 9-1-1 calls beyond the scope of existing resources. Repeat ambulance callers may be struggling with mental illness, substance abuse, homelessness or other issues. Challenged by "revolving door" patients, the program proactively averts non-crisis calls which may delay the response time to true emergencies.. The program also engages individuals who have fallen through the cracks and links them to community resources including medical and mental health services, substance abuse treatment, government benefits and housing assistance.. To Get Started: Program restricted to repetitive users of emergency services and directly referred by Huron Valley Ambulance. For information, please call 734.663.4219. Residents in the following counties are eligible: Jackson; Lenawee; Monroe; Oakland; Washtenaw; and Wayne.. Cost: None to ...
  https://csswashtenaw.org/food-housing/hva-patient-advocacy-program/
*  Patient Advocacy | MultiCare Health System
Puget Sound Area 800-919-1936. MultiCare Deaconess Hospital 509-473-2915. MultiCare Valley Hospital 509-473-5184. MultiCare Rockwood Clinic 800-776-4048. MultiCare is voluntarily accredited by The Joint Commission to ensure that our quality of care is of the highest standard. Should you feel your care was not of the highest standard, we encourage you to contact us. You may either contact management for the service area directly or contact a Patient Advocacy specialist using one of the methods described above. The public may contact the Joint Commission's Office of Quality Monitoring to report any concerns or to register complaints about a Joint Commission accredited health care organization by either calling 800-994-6610 or emailing [email protected].. ...
  https://www.multicare.org/patient-advocacy/
*  Executive Summary - Patient Advocacy Workshop | EFCCA
This is the Executive Summary of the Patient Advocacy Workshop on Patient Safety which took place in Barcelona from 4-6 February 2016 and gathered over 60 patient representatives from a wide range of immune modulate disease groups.A full report will be made available shortly.. ...
  http://www.efcca.org/en/news/executive-summary-patient-advocacy-workshop
*  SEARHC honors National Patient Advocacy Week | Juneau Empire - Alaska's Capital City Online Newspaper
The SouthEast Alaska Regional Health Consortium is joining with other health care organizations around the country to honor National Patient Advocacy Week, which began Monday and runs through Sunday.
  http://juneauempire.com/local/2012-04-10/searhc-honors-national-patient-advocacy-week?quicktabs_1=1
*  Elderly Hospital Discharge: Patient Advocacy
Elderly patients are frequently readmitted to the hospital shortly after discharge due to lack of care coordination, patient advocacy and senior services.
  http://www.agingwisely.com/problematic-transitions-of-care-elderly-hospital-discharge-readmissions/
*  Patient Advocacy: Concept Analysis - WriteWork
Patient Advocacy: Concept AnalysisNursing is a challenging, rewarding and exciting career. The nurse's role is not limited to changing bandages, giving needles and offering support, as the past has indicated. The role of the modern nurse is one of advo...
  http://www.writework.com/essay/patient-advocacy-concept-analysis
*  Patient Advocacy Careers: Medical Bill Reviewer
One form of patient advocacy helps patients and their caregivers review their hospital and other medical bills to be sure they are not being overcharged.
  https://www.verywell.com/medical-bills-claims-reviewer-2614840
*  2017 BIO Patient Advocacy Pavilion: Bringing Patient Centricity to the Forefront | BIOtechNow
The role of patient advocacy organizations in the life cycle of drug development has gone through a significant evolution. In addition to effectively enhancing
  http://www.biotech-now.org/health/2017/06/2017-bio-patient-advocacy-pavilion-bringing-patient-centricity-to-the-forefront
*  Robert N Klein, patient advocate and author of proposition 71 | Patient advocate, Bob Klein Public Policy Profile
Robert Klein, author of Proposition 71 - the proposition that funds medical research in stem cells. He is well known for his work in patient advocacy.
  http://bobkleinpublicpolicyprofile.com/photos-of-stem-cells/