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  • 00:31

    Who is Listening to the Patient Voice?

    in Health

    Robin and Joyce speak with Lesley Bennett, state coordinator for the National Organization for Rare Disorders (NORD) in Connecticut, about the importance of the voice of the "consumer" in healthcare as in retail or other "marketing" relationships.

    Joyce and Lesley recently attended the annual meeting of the New England Regional Genetics Group (NERGG) in Portsmouth, New Hampshire.  What role should consumers play in a professional organization?  NERGG has included consumers in its governance for the past 38 years, and yet they are still struggling to define a clear role for consumers in the workings of the organization.

    What do consumers want? How can organizations work with them to include them in constructive ways?

    Who is Listening to the Patient Voice?

    Patients and the regulatory process - appraisal, approval, access issues
    Patient involvement in clinical trials -  design, recruitment and retention
    Patient involvement in the design of hospital cancer services
    The patient voice in kidney cancer guidelines/pathways

  • 00:30

    Should I go to Patient Support conference?

    in Health

    What happens at a patient support conference? Is it worthwhile to go, or will it be stressful? 

    Carla talks with Robin and Joyce about her own recent experience. 

    Carla applied to the New England Regional Genetics Group (http://www.nergg.org) for an A. Merrill Henderson scholarship to attend a patient support conference.  This grant enabled her to attend and learn. 


  • 00:32

    Patient Information - new info for VHL

    in Health

    There are many challenges common to all rare diseases:

    1. How to get a correct diagnosis?

    2. How to find doctors who understand the condition and can provide therapeutic help.

    3. How to manage day to day, making choices and getting medical help to moderate the symptoms and maximize one's quality of life.

    The VHL Alliance assembled its first collection of guidelines for patients and their general doctors in 1993, and has been evolving it regularly since then as new information has emerged.  This is now one of the best established Handbooks for a rare disease -- now in its 5th edition, and translated into 15 languages.

    Joyce and Robin speak with Suzanne Nylander, O.D., editor of the 5th edition, about what's new in the Handbook, how the Handbook helps both patients and doctors, and what they have learned about the power of sharing information -- among patients and among physicians and healthcare systems worldwide.

    Hard copies are available for purchase from the Alliance or from Amazon.com.  You can download the text for free at http://vhl.org/handbook.

  • 00:24

    Patient Access and Intake and You

    in Health

    As more and more hospitals, clinics, and doctors merge and integrate into large health systems. It can become confusing for patients to know where and how to receive care. Coordinating efforts to improve patient access and intake takes serious strategy and planning across the entire enterprise. Singola is here to help.

  • 00:30

    President of "Medical Cannabis Advocates of Alabama" Faye Medlock

    in Health

    In this episode of "Bringing Voices To Power" I talk again with Faye Medlock who's President of "Medical Cannabis Advocates of Alabama" and we will do a short recap of the October 16, 2015 "Rally for Cannabis and Civil Rights" in Montgomery, Alabama where I gave the opening speech and covered the event for HuntsvilleBlack.com. We will talk about the the upcoming rally in Montgomery and how anyone can get involved and about the possibility of a "CBD Oil Bill" being considered in the political halls of Montgomery, Alabama.

  • 02:00

    The Truth Advocates Show 02

    in News

    The Truth Advocates, with your host Savvy Macheras and Co-host Travis Gorman, exposing more historical truth and expanding on our first episode!  The news segment is just as crazy for this show as it was on the last show, mind boggling for sure.  You have to wonder why and how things have gotten so out of control on our planet.  We look forward to sharing these two hours with you!  Please feel free to participate in the conversation by calling in, joining our chat room and/or through our facebook page.  www.facebook.com/thetruthadvocates


    Shahram Hadian     https://www.youtube.com/watch?v=ZS9NaCSrjoo

  • 01:00

    Author Robin Farmanfarmaian on The Patient as CEO

    in Health

    How can we understand the current medical revolution that is driven by accelerating technologies and thus be empowered? Join us as bestselling author Robin Farmanfarmaian talks about how medical technology can empower the consumer.

    Robin Farmanfarmaian is an entrepreneur, founder, speaker and best selling author working in cutting edge technology and medicine. Currently Farmanfarmaian is the COO and SVP of Arc Fusion Programs, working on the fusion of medicine, science and IT, and a VP at INVICTA Medical, a device company for sleep apnea. A life long philanthropist and mentor, she is the Co-Founder and on the Board of Directors (formally Executive Director) for the Organ Preservation Alliance, catalyzing breakthroughs in organ banking for transplants and tissue engineering, and President for the Innovation for Jobs Summit, finding solutions to disrupt unemployment.  Robin is on the advisory board of many startups and conferences, and mentors female entrepreneurs. Previous work includes being one of the founders of Morfit, the Exponential Medicine conference, and a VP at Singularity University. Her book, “The Patient as CEO: How Technology Empowers the Healthcare Consumer”, is a #1 Best Seller on Amazon.

  • 01:34

    The Truth Advocates Episode 3 So you think you know the Bush family??

    in News

    The Truth Advocates, with your host Savvy Macheras and Co-host Travis Gorman, exposing more historical truth and WOW.. this is going to be an INCREDIBLY enlightening show!!!!  I would even go so far as to say monumental!!!  We will take a step back in time and review some facts regarding the Sandy Hook incident and Ravin Cumberland is back with news that will blow your minds!  You don't want to miss this show!  I'm so excited I wish it was showtime already!!  Join us as more of the truth is revealed!

  • 01:59

    Election Boycott Advocates: Obomber's State of the Union Address.

    in Politics Progressive

    Join us, Friday 15 January 2016 at 9 p.m. EST on Carson's Corner With the Election Boycott Advocates as we host a special panel analysis and rebuttal of President Barack Obama's final State of the Union address. Among Obama's boasts and claims were:

    "...the United States of America, right now, has the strongest, most durable economy in the world. We’re in the middle of the longest streak of private-sector job creation in history. "Anyone claiming that America’s economy is in decline is peddling fiction. What is true – and the reason that a lot of Americans feel anxious – is that the economy has been changing in profound ways, changes that started long before the Great Recession hit and haven’t let up."

    "The United States of America is the most powerful nation on Earth. Period. It’s not even close. We spend more on our military than the next eight nations combined. Our troops are the finest fighting force in the history of the world. No nation dares to attack us or our allies because they know that’s the path to ruin. Surveys show our standing around the world is higher than when I was elected to this office, and when it comes to every important international issue, people of the world do not look to Beijing or Moscow to lead – they call us."

    "The Middle East is going through a transformation that will play out for a generation, rooted in conflicts that date back millennia. Economic headwinds blow from a Chinese economy in transition. Even as their economy contracts, Russia is pouring resources to prop up Ukraine and Syria – states they see slipping away from their orbit."

    Our panel of speakers will confront these lies with the facts and shead light on Obama's dark agenda of imperialist war abroad and capitalist violation of workers' rights at home.

  • 01:59

    The Truth Advocates Premier Show First Episode

    in News

    Introduction to The Truth Advocates, with your host Savvy Macheras and Co-host Travis Gorman, the topics of today include overall view of our planet and the conditions of our lives and the world we live in.   Seeking the truth and knowledge regarding the condition of the planet as it is at this time. Ravin Cumberland will be joining our show today to lay down some historical facts that lead up to where we are now.  We invite you to call in and be a part of the show!

  • 02:02

    Carson's Corner with the Election Boycott Advocates.

    in Politics Progressive

    On this episode of Carson's Corner with the Election Boycott Advocates, we discuss Obama's rare end of the year press conference. It seems that the Obama administration, at least temporarily, it backing down from regime change in Syria. We'll discuss the factors that may have influenced this decision and the implications for the future.

    The campaign of Bernie Sanders also held a press conference today to discuss the DNC's decision to deny the Sanders campaign access to the data, which cripples the Sanders campaign due to the fact that they won't be able to make calls or house visits without the data. This move has prompted the Sanders campaign to sue the DNC. According to Election Boycott Advocate Christopher Alan Driscoll, "This is more proof that electoral efforts by the working class are foolish and wastefull of our time and efforts. The Democrat officials are trying in every way they can to sabotage the Sanders campaign.