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The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. Material on this site created by others is theirs and use follows their guidelines.

Death by a Thousand Clicks: Where Electronic Health Records Went Wrong https://t.co/WdS36FfEub

16, Sophomore, All-In. Sara has lived her entire life with chronic medical issues. She's learning to drive her own healthcare and manage the transition from pediatric to adult medical care. @S4PM @pccdsln @caregiving @PCORI #tpfalumni @alexisandrea256
https://t.co/y2Y3N32jhl

Looking forward to seeing friends, speaking on #familycaregiving with @SterlingHIT @HealthHats & others at the spring conferences. Who else will be at the @BerylInstitute #PatientExperience Conf, @ASAging Aging in America Conf, or the @IHAhealthlit Conf? @S4PM

Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, heart-breaking, and inspiring
https://t.co/uggSbfxBPq @S4PM @CoalitionCCC @pccdsln @PCORI #TPFAlumni @caregiving @tsalliance @wildflowerwrite

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Recent Blog Posts:

ePatientMusicianPodcasts
March 17, 2019

16, Sophomore, All-In

Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent…
AdvocateCaregiverPodcastsUncategorized
March 10, 2019

Three Young Adults. 22 Years.

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the…
ePatientResearcher
March 3, 2019

Citizen Participation in Rare Disease Research. It’s Rare.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There may be as many as 7,000 rare diseases. The total number…

As an action catalyst, I empower people traveling together toward best health (people as patients, caregivers, parents, clinicians, direct care staff, communities, and the people that support them). I wear many hats in healthcare:

  • Patient with Multiple Sclerosis
  • Care partner for several family members’ end-of-life journeys
  • Nurse for 40+ years
  • Informaticist
  • QI leader
  • Husband, Father, Opa, Musician

I specialize in patient/ caregiver/ clinician/ community relationships and the intersection between technology and the health journey.

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