Behind the Episode: An Advocacy Podcast by Cure AHC – Details, episodes & analysis

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Behind the Episode: An Advocacy Podcast by Cure AHC

Cure AHC

Business

Frequency: 1 episode/41d. Total Eps: 4

A podcast created for the AHC community, by the AHC community. Bringing you information that us hopeful, digestible, and supportive! Each episode will take you behind the moments of life with AHC, sharing research updates, insights from specialists, guidance on patient care, stories and support for families walking this rare disease journey.

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https://www.rare-hope.org/who-we-are/our-founders
2 shares
https://www.rare-hope.org/ahc-research-program/about-the-ahc-research-program
2 shares
https://www.rare-hope.org/impact
2 shares

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Score global : 37%

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The Ultimate Family Meeting Preview | What Not to Miss, Featured Guests & How to Join From Anywhere

Season 1 · Episode 4

Wednesday, June 3, 2026 • Duration 42:37

Spotlight Family Social Media Account: Abilities First Texas, by Katy Pipak Williams, Mom to EK who has AHChttps://www.instagram.com/abilities.first.tx/# FAMILY MEETING INFO:Virtual attendance is available again this year. Virtual attendees will be able to watch presentations live and participate in live Q&A sessions throughout the weekend.Virtual registration is $50. If cost is a barrier, email Izzie for help.Time zone conversions for live sessions:• California — 6:00 AM PDT• Chicago — 8:00 AM CDT• London — 2:00 PM BST• Central Europe — 3:00 PM CEST• Dubai — 5:00 PM GST• São Paulo — 10:00 AM BRT• China — 9:00 PM CST• Australia (Sydney) — 11:00 PM AESTYou can view the full agenda here: https://static1.squarespace.com/static/5bdfc7a3cef372e7bbfcb463/t/6a1dadd2ab0f493a33ec674c/1780329962252/Meeting+Agenda To register for virtual attendance: https://cureahc.charityproud.org/EventRegistration/Index/26166?fbclid=IwY2xjawQDFAZleHRuA2FlbQIxMABicmlkETIxakZpaXcwNlpHYTlNcG9sc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHk_R6S8mJqHLSKAgXN1oS8tIiy4eL-nAoAcXtl3olG7BWlhvlJOieC_MC00X_aem_2y3PUqrvGL760Vnv2ykyFQNon-English Speakers: We will release recordings after the meeting along with transcripts in various languages.Research Reminders:1. Patient Registry: https://docs.google.com/forms/d/e/1FAIpQLSc8X-QGp9E4Hj-kIZFIly_Nefu9sWt7k3vdoZToNcRXPsGsUA/viewform2. Rare Hope Patient Surveys: https://www.rare-hope.org/ahc-research-program/patient-data3. Patient Priorities Survey: https://docs.google.com/forms/d/e/1FAIpQLSfbrkVDvQz8M2-pvfJq0rmJqbbnOVzhGOPApdTOke02opeAJQ/viewform4. Sleep, Triggers, Medications, and Headaches: Insight into the AHC Patient Experience: https://docs.google.com/forms/d/e/1FAIpQLSfWsLKeUi9Lm5TU1KLg9FsfyHuZ-q47-9xzy7n43bt1vQ9weg/viewform5. In July 2026 -- stay tuned to be able to start a Combined Brain account to begin enrolling in patient-driven data collection in order to have your patient’s information included in ongoing research efforts Podcast Submission link: https://forms.gle/gU31JB8GAfSnmWWL6-Submit to have your social media account featured-Submit to appear on the podcast and share your storyJoin our global AHC Research & Support Group All AHC patients, ATP1A3 and ATP1A2 related conditions, all phenotypes and genotypes welcome! https://www.facebook.com/share/g/18Ztn3AiGf/ Need support? Contact Izzie at izzie@cureahc.org, on Facebook at @IzzieDuval or WhatsApp!Podcast Team:Izzie Duval - HostHannah Zimmer - Co-host, Producer & Social MediaCorey Zimmer - Producer & Editor

Behind the Episode: An Advocacy Podcast by Cure AHC – Details, episodes & analysis

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Behind the Episode: An Advocacy Podcast by Cure AHC – Details, episodes & analysis

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