SORT BY Relevancy
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
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.
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.
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.
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.
Mark 12:41-44 New King James Version (NKJV)
The Widow’s Two Mites
41 Now Jesus sat opposite the treasury and saw how the people put money into the treasury. And many who were rich put in much. 42 Then one poor widow came and threw in two mites,[a] which make a quadrans. 43 So He called His disciples to Himself and said to them, “Assuredly, I say to you that this poor widow has put in more than all those who have given to the treasury; 44 for they all put in out of their abundance, but she out of her poverty put in all that she had, her whole livelihood.”
Mark 12:42 Greek lepta, very small copper coins worth a fraction of a penny
Guest co-host Ken DeCosta, Mike Boler and show creator George R. Lopez host "Prime Time Paranormal" every Monday from 9-11 pm e.s.t.. Bringing you the top names in the community from John Zaffis and Rosemary Ellen Guiley to Nick Groff and Grant Wilson just to name a few. Jason Gowin of Extreme Paranormal as our on the scene correspondant joins Ken, Mike and George on Mondays from time to time.
Radioshowdeadair@gmail.com for guest inquiries and comments
1-646-929-2384 to call into the show.
Tonight our incredible special guest is Kevin McCormack, the communications director at CIRM, California’s stem cell institute. Kevin is also a dear friend of Help4HD and was a featured keynote speaker at our first symposium in 2014.
He considers himself to be the official translator for the agency, working to turn complex language about equally complex science into everyday English that anyone, including Kevin, can understand. Before joining the agency he spent more than 20 years working as a journalist, most of that in TV news in San Francisco, California.
There is a new leader at CIRM, President and CEO Randy Mills and a new strategic plan. The topic of tonight’s show is CIRM’s new Strategic Plan which aims to engage the patient advocate community to increase the number of clinical trials CIRM funds, to help recruit patients for those clinical trials and to help make changes in the way the FDA works in order to speed up the ability to move promising research into clinical trials in people
So tune in for a very enlightening show!
Life In Florida - Topics for tonight's show:
SB1044 - Foreiture of Property
SB1290 - FL Acquisition and Restoration Council to review the land that the state of FL owns and no longer needs.
SJR942 - Amendment to the FL Constitution which will make the Commissioner of Education an elected position
Gun Rights, Red Light Camera and Direct Patient & Doctor Agreement.
Alexander Snitker As a United States Marine veteran, Alexander knows how to serve his country. That dedication to his country did not end when his service in the military ended, as he became the first Libertarian U.S. Senate candidate from the State of Florida in 2010.
Alex is the President of the Liberty First Network. LFN is the liberty lobbying organization based in Florida that works in Tallahassee on positive liberty legislation and educates the citizens on the political process. Alex is also the Chairman of the Florida Libertarian PAC founded in 2015 with the goal of bringing libertarian candidates and issues to the forefront of policy in all levels of Florida government inside.
Paul “Dave” Gaubatz, Former Federal Agent, is a U.S. State Department trained Arabic linguist and counterterrorism specialist. Working on assignments in Middle-Eastern countries such as Saudi Arabia, Jordan, Kuwait and Iraq, Dave has more than two decades of experience. Dave is the owner of Wahhabi CT Publications and provides counterterrorism training materials for law enforcement and other organizations. Dave is also the author of Muslin Mafia.
Two weeks ago, I said, while with big injuries, if they can stay at .500, it would be a big success. It would allow them to heal up and get ready for the next lap of the season. Lo and behold, this is where they have been with an OT loss to Vancouver, a win versus Ottawa, a loss against Detroit and a postponement against the Flyers. Two big injuries and got 3 points in 3 games.
Hamonic is back, Boychuk will be too after all star break
So what's next...
More misery from fans? Surely. Lots of hope of rescue in a trade deadline miracle? Don't hold your breathe.
What is needed is for players not performing as they did last year to get on track or ramp up. That will be the big difference maker.
ASSESSING EDUCATIONAL PRODUCTS? FOR CLASSROOM USE
SEG Measurement's Dr. Scott Eliot, our resident expert, returns.
Presented by Planet HS
eCareDiary's caregiving expert, Margery Pabst will speak to Bonnie Friedman, owner of a consultancy business and a crusader for healthcare advocacy about why patient advocacy is crucial and how caregivers and patients can intervene in hospital communication.
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