About us
Chronically Informed is a platform showcasing short-form videos for patients with chronic illness, by patients with chronic illness. Stories shared in the videos provide experiences of success and practical techniques for navigating the medical system. The goals of Chronically Informed are to create hope for people with chronic illness, help patients partner with their providers, and improve healthcare for patients.
- Website
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www.chronicallyinformed.org
External link for Chronically Informed
- Industry
- Non-profit Organizations
- Company size
- 1 employee
- Type
- Nonprofit
- Founded
- 2024
Employees at Chronically Informed
Updates
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Thank you to all of the advocates who testified with our Executive Director, Dr. Jessie Shay, and our Advisory Board Member, Jon Gaga, yesterday! We are so proud to have helped pass CO SB26-140 out of committee. We have a long way to go, but the folks we work with are dedicated and incredible. They share their stories to create systemic change. ❤️ We are grateful to the Senators on the Health and Human Services Committee who voted in favor of the bill yesterday.
SB26-140 made it out of Committee! 5 to 2! This was no easy feat, and we're thrilled to see it moving forward! 🙌 Now, it's heading to the Senate floor. A huge THANK YOU to our sponsors and everyone who testified! 💜 We still have work to do, but we are taking this victory tonight! #SB26140 #CF #rarediseasewarrior #ProtectAccess #advocacymatters *We were giving out purple roses today- to show our gratitude to legislative rare disease champions. Thank you Senator Frizell, Senator Marchman, and Senator Kirkmeyer. Happy tears were shed this evening. 🌹 Do you know why roses are symbolic to CF patients? -The "65 Roses" story dates back to 1965 when an observant 4-year-old, Richard "Ricky" Weiss, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, "65 Roses" is a term often used by young children with cystic fibrosis to pronounce the name of their disease. story credit: Cystic Fibrosis Foundation Thank you to our partners at ActNow Bridget Dandaraw-Seritt, Lupus Colorado , Chronic Care Collaborative, and Chronically Informed who helped us get this past the finish line! *Special thanks to No Patient Left Behind , Community Access National Network (CANN) and any other friends we might have missed!
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Finding the right care team isn’t just about medical expertise—it’s about finding a partner who actually listens. 🤝 In our latest video, Reid (he/him) opens up about the realities of managing a chronic condition while navigating multiple providers. From primary care to specialists, Reid shares how he learned to speak up, define his needs, and ensure his voice was the loudest one in the room. 🎥 Inside the Video: The Advocacy Journey: How Reid transitioned from a passive patient to an active self-advocate. Setting Expectations: Why telling an office exactly what you need in a provider is a game-changer. The Power of Fit: Finding the balance between clinical skill and a supportive bedside manner. Self-advocacy is a skill, and Reid is proof that you don't have to just "settle" for the care you're given. You have the right to a team that works with you. Watch now: chronicallyinformed.org Explore more resources: https://lnkd.in/g4EyBExB #PatientAdvocacy #ChronicIllness #SelfCare #HealthcareJourney #ChronicallyInformed #PatientVoice #WorkingWithProviders
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Did you know that CI provides trainings, facilitation, and other services to patient advocacy groups and organizations looking to support their work? It was an honor to have the Colorado BioScience Association invite our Executive Director, Dr. Jessie Shay, DSW, MSW, to join them for their Day at the Capitol and provide a training on the importance of storytelling!
CBSA’s Annual Day at the Capitol brought together life sciences leaders, innovators, ecosystem partners, and patient advocates to strengthen Colorado’s innovation-forward environment. The day began at the Colorado State Capitol with a company showcase and networking, highlighting the impact of Colorado’s life sciences community. We thank the State legislators and policymakers, who joined us at the Capitol: Senator Mark Baisley (R) Representative Kyle Brown (D) Representative Jarvis Caldwell (R) - Minority Leader Senator Lisa Cutter (D) Representative Sheila Lieder (D) Senator Larry Liston (R) Xander Martin - Deputy Legislative Director, Office of the Governor Senator Robert Rodriguez (D) Senator Cleave Simpson (R) Representative Matthew Soper (R) Representative Dan Woog (R) ...and others. A special thank you, as well, to our speakers, Bridget Dandaraw-Seritt, Founder of Advocates for Compassionate Therapy Now, and Dr. Jessie Shay, DSW, MSW, Executive Director and Founder of Chronically Informed, and to our lobbying partners at Colorado Legislative Strategies, for leading this year’s advocacy training and equipping our community with the tools to engage effectively. CBSA’s Day at the Capitol continues to showcase the power of collaboration between life sciences leaders and policymakers in keeping Colorado at the forefront of innovation. #CoBioScience #STrongerTogether #Driven
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Do hard things. Gently. Not all at once. Not perfectly. But, with awareness of your breath. Respect for limits. Compassion for the you that’s tired. Hard things are not conquered. They are met. Meet them with presence. Your world expands. Not through force, but through care. #DoHardThings #ChronicallyInformed #YouAreCapable
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Illuminate Change in 2026 We are preparing our Annual Fundraiser Gala dedicated to uplifting voices and celebrating the impact of advocacy. We need help. We need sponsors. Sponsorships support patients, expand education, and amplify advocacy. If your organization or business would like to partner with us as a sponsor, we’d love to connect. Together we illuminate change. Email jessie@chronicallyinformed.org Together we build community. #ChronicallyInformed #Illuminate2026 #PatientAdvocacy #ChronicIllnessCommunity #HealthcareAdvocacy #DisabilityAdvocacy #NonprofitFundraising #CommunityImpact #SupportPatients #ChronicIllnessAwareness
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Free technology classes and resources for adults 60+ through Older Adults Technology Services and their program Senior Planet from AARP. Build confidence with technology and stay connected in today’s digital world. Learn to use smartphones, tablets, and computers. • Online safety and scam prevention • Telehealth and health technology • Social media and staying connected • Fitness, wellness, and lifelong learning classes Many programs are free and available online or in person Explore more here: 🔗 https://lnkd.in/gw2UJ5jA Learning new skills is fun. #LifelongLearning #AARP #TechForSeniors #HealthyAging #CommunityResources #DigitalLiteracy #ChronicallyInformed
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Water does not fight the stone. It flows, adapts, and reshapes the world around it. Patient voices, like water, flow together and carve a path toward change. From the smallest trickle in the headwaters to the wide, meandering embankments of the delta, every drop finds its way forward. #PatientAdvocacy #BeLikeWater #ChronicIllnessCommunity #Resilience #ChronicallyInformed
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