Finding appropriate treatment and support for a child with a rare disease is difficult in any circumstances, but it can be extremely challenging in rural Alaska. Specialists are few and far between and travel often involves hundreds of miles and long plane rides. Greta and Mary Middleton first crossed paths as they attempted to find good care for their children with special needs. They now work together to empower other families, locate and access good care and implement policies that address the complex problems they face.
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Explore information about the Alaska Highway system.
Learn more about Stone Soup Group and the ways they support families in Alaska.
If you are located outside of Alaska and are looking for family to family support, please visit Family Voices and Parent Center Hub.
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Every day, our experiences are shaped by our race, gender and even our age. But how does our identity shape the health care we receive and provide? Listen as Hanane Abdalla, Arthur Pope, MD, PhD and Sandra Sufian, PhD, MPH share their stories about how their identities impact their lives, their work and their ability to deliver and receive equitable health care. This season is brought to you in collaboration with ZERO- The End of Prostate Cancer (ZERO). This builds upon the Promoting Health Equity in Cancer Care: A Virtual Workshop hosted by The National Academies of Sciences, Engineering, and Medicine (NASEM) which was co-chaired by Gwen Darien of NPAF and Reggie Tucker-Seeley of ZERO. ...
In this episode, Rebecca Kirch, Executive Vice President of Policy and Programs for the National Patient Advocate Foundation, describes the important role social and financial needs navigation services contribute to advancing health equity. All people should have the ability to determine their health decisions based on what’s best for them in the context of their own circumstances, without worrying about financial devastation. Policies and programs expanding availability of needs navigation target the constellation of concerns including access and affordability challenges that patients experience by steering them to safety net solutions. Listen as Rebecca shares how National Patient Advocate Foundation and other partners are mobilizing behind new health equity policy approaches to make needs navigation part of mainstream medicine. It's a win-win strategy for helping all patients in all settings secure affordable, high-quality care. Visit our website to explore show notes, additional episodes and our mission: http://bit.ly/NPAFpod Connect with us on social media!Twitter: @NPAF_Tweets: http://bit.ly/NPAFtwitter Instagram: @Patient_Advocates: http://bit.ly/NPAFinstagram Facebook: National Patient Advocate Foundation: http://bit.ly/NPAFfacebook ...
What does data collection and analysis tell us about the issues that people face when they face serious illnesses and try to access health care? Kate Gallagher works with the Patient Advocate Foundation to learn what issues patients face, how they deal with these, issues, what gaps exist in accessing equitable health care and what impact does financial toxicity have on people’s live. Kate and her colleagues provide the information critical to understanding both individual experience and bringing about important improvements to our health care system. Visit our website to explore show notes, additional episodes and our mission.Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory Connect with us on social media!Twitter: @NPAF_TweetsInstagram: @Patient_AdvocatesFacebook: National Patient Advocate Foundation ...
