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.
Visit our website to explore show notes, additional episodes and our mission.
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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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 ...
Everything that happens in your life affects your ability to be healthy, to be well, and to be yourself. It's integral to connect clinical experiences to lived experiences happening outside of the doctor's office- in our communities, families, and neighborhoods. Kellan Baker reminds us that patients are experts in themselves and should be respected as partners in their healthcare journey. Listen as he shares with us the highest goal of health equity is to be fully ourselves. It makes it possible for everyone to be who they are and receive quality and equitable care based on their individual needs defined by their identities, bodies, and circumstances in life. Kellan challenges us to see all the possibilities available when all people have access to benefits, protections, and resources that allow us to be our healthiest. 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. ...
This year, Patient Advocate Foundation is celebrating 25 years of providing service to people facing serious illnesses. In this podcast, our CEO Alan Balch talks about the work we do and why it is so important. He highlights the extraordinary contributions that PAF caseworkers make in helping patients and caregivers navigate a complex health care system. For so many people, being diagnosed with a serious or chronic disease disrupts their entire life and can with it crushing financial and social problems. People find themselves facing huge medical bills, needing help understanding their insurance coverage or finding a plan that works for them, or making hard choices about whether to fill prescriptions or buy groceries. PAF case managers work closely with individuals and families to solve these issues and become better advocates for themselves. Contact our case managers for assistance: http://bit.ly/PAFcase 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 ...