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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.
Diane Tomaz of the Massachusetts Adoption Resources Exchange (MARE) talks about adoption and the needs of the children waiting in foster care.
Many of these children have special needs. Addy is a good example.
Addy is a 4-year-old Caucasian girl who continues to make tremendous progress in her growth and development. Addy has some developmental delays and a genetic condition called Micro-duplication syndrome, which can present as having Autism like symptoms and behavioral challenges. She will need to be formally re-evaluated in the future to determine if she still falls on the Autism spectrum due to the tremendous progress she has made.
Addy attends pre-school with the support of an Individualized Educational Plan. She is no longer in a self-contained classroom due to the gains she has made and she is now in an integrated preschool program. Addy’s speech has also increased and she continues to receive speech therapy at school to assist with her speech delays.
Legally freed for adoption, Addison will need a family that is prepared for her needs and the unknowns that come with it. A family that has parenting experience would be preferred.
Addison will need a family that is able to keep her in contact with her younger sister and grandmother with four to six visits a year. She also has an open adoption agreement with her birth mother for post-adoption visits.
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
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.
Purposed 4 Godliness w/Minister Daffany Smith, M.Div. "But have nothing to do with worldly fables fit only for old women. On the other hand, discipline yourself for the purpose of godliness" (1 Tim 4:7). "You Are Purposed 4 Godliness" this empowering ministry is designed to bring Biblical insight to current issues; address your needs and plant the seed of Godly purpose. This ministry shares with you God’s word through the testimonies and ministries of others who will inspire and motivate you to live a life purposed for godliness. You can also call in and share your testimony @ 347-989-0144. Join us Friday and Saturday Mornings 8:30-9:00 AM Pacific Time. Sundays at 8:00 - 8:30 a.m. Pacific Time for Purposeful Worship. We appreciate your support. Call in 347-989-01441334. Please email us at: firstname.lastname@example.org with your prayer request or praise report. Be encouraged in knowing that God has a purpose for you.
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.
Faith and Prayer
Saturday Morning Praise w/Min Daffany Smith is a great way to start off your Saturday! Get motivated and uplifted Saturday mornings from 8:30am - 9:00am PST.
Hi this is your Host Minister Daffany, inviting you to check me out on Saturday Mornings. I have information, announcements, recap from Friday's show and words of encouragement to help you with the purpose God placed in you.
Call 347-989-0144 every Saturday at 8:30 a.m. PST and join the conversation. Email me @ email@example.com any issues, comments, questions you believe will help this ministry grow. I also invite you to check me out on facebook Don't forget you can email me anytime at firstname.lastname@example.org to submit your comments.
"You Are Purposed 4 Godliness"
Matthew 21 - In the morning, as he was returning to the city, he became hungry. And seeing a fig tree by the wayside, he went to it and found nothing on it but only leaves. And he said to it, “May no fruit ever come from you again!”And the fig tree withered at once.When the disciples saw it, they marveled, saying, “How did the fig tree wither at once?” And Jesus answered them, “Truly, I say to you, if you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen. And whatever you ask in prayer, you will receive, if you have faith.”
Join me this morning! Call in Effectual Fervent Prayer Call, get in the chat room, Purposed 4 Godliness Effectual Fervent Prayer Call @ 8:00 a.m. pt. 347-989-0144 - email@example.com
Invite someone to listen 8-9 a.m. PST/11am - 12 pm EST at blogtalkradio.com/daffanysmith, download the iTunes app or listen online blogtalkradio.com/daffanysmith
Yes I Care Ministries International with Evangelist Brucilla Ann Williams 2nd anniversary February 4 2016
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