Ryan Rodarmer, MS 🧬♥️

18 months. $90K in wrong meds. A denied antibiotic. And Temu Rifaximin on a slow boat from India. I wrote about what it actually takes to fight a broken medical system when you're too sick to fight. For everyone who's been told nothing is wrong. linkedin.com/pulse/when-sys…

Please take a moment today to support The Give Kids a Chance Act and help drive breakthroughs for children with rare diseases by taking action at: rarediseases.org/driving-policy… #RareDisease #genechat

World-renowned VEDS experts direct to our community coming up on 10/27. ❤️ Register now (free but required): marfan.org/calendar/ask-t… Don't miss this event, available only through the VEDS Movement, a division of the Marfan Foundation. @UWMedicine @HopkinsMedicine @TexasChildrens @OHSUNews

@Icarus1054 @NHSBartsHealth @BartsAorta @AorticDissectUK @THINK__AORTA 👏👏👏

Almost 10 years post acute Aortic Dissection, pausing for a moment of gratitude in the square at @NHSBartsHealth this morning en route to my cardiology checkup. Thank you, team @BartsAorta ❤️ @AorticDissectUK @THINK__AORTA

Depression and chronic illness often intersect in complex ways. Rosanne Wetzel shares her personal and professional perspective — and a call to action for those impacted by VEDS. (Note: this story discusses depression, addiction, and loss). marfan.org/blog/behaviora… #VEDSActionMonth2025 #TheVMatters #BehavioralHealth #MentalHealth #ChronicIllness

@MarfanFdn @HaoYin20 @JCoselli_MD Thank you, @JCoselli_MD!

Thank you to Dr. Coselli and Dr. Orozco-Sevilla for showing the world that the V Matters! @JCoselli_MD #TheVMatters #VEDSActionDay2025 #VEDS #VASCULAREhlersDanlos

@jmills1955 I'm stress eating. 😂

This is a great ballgame. #MLB

"There are 13 recognized types of Ehlers-Danlos syndrome. Vascular EDS (VEDS) is the subtype most strongly associated with life-threatening complications. Feeling confident your doctors understand this can seem impossible, but it is not. Learning to advocate for yourself and speaking clearly about VEDS is key to our community." - Dominick #TheVMatters #VEDS #VASCULAREhlersDanlos #VEDSActionMonth2025

"The V matters so everyone will understand the importance between life and death and us with VEDS will be taken seriously." - Joy Share VEDS911.com with everyone you know, especially first-responders and other emergency medical professionals.

The "V" stands for Vascular. The "V" Matters! Name your risk and teach loved ones to do the same in order to advocate for optimal care in medical settings. 📚Learn more: thevedsmovement.org 🏥 veds911.com #VEDS #TheVMatters #VASCULAREhlersDanlos #VEDSActionMonth2025

We are thrilled to announce that our NEW Large Language Model will be released on 11.18.25.

Why does the V Matter to you? Kristi says "It means not only am I hypermobile, not only do I bruise easily, but my type of EDS is lethal." Paint on your red V...lipstick, facepaint, washable markers - whatever you got! Tag us in your pic, share in comments, or send to brandcomms@marfan.org We want to hear and see why the V in VEDS matters to YOU personally, and we want to tell the world! #TheVMatters #VEDS #VascularEDS #KnowConnectThrive #VEDSActionMonth2025

Aortic Dissection Awareness Week has concluded, with great thanks to all who made it a powerful educational moment. Aortic dissection awareness continues every day. Read Adriana's story. marfan.org/blog/healing-a… #STAT #AortaEd #ThinkAorta #ThinkAortaThinkFamily

Check out my latest article: "So. Pretty health guy." linkedin.com/pulse/so-prett… via @LinkedIn #RareDisease #ChronicIllness #PatientAdvocacy #HealthcareExperience #SelfAdvocacy #InvisibleIllness #TrustInHealthcare #ListenToPatients #Marfan #LoeysDietz #VEDS #AortaEd #ADAW

This week for #ADAW2025, @MarfanFdn is sharing my story publicly for the first time. It’s humbling & vulnerable, but it matters. Surviving isn’t just my story—it’s about the people, community & mission that turned survival into purpose. Awareness saves lives. #ThinkAorta #STAT

Thank you @RareRevolutionM for helping us save more lives with #STAT #AortaEd #ThinkAorta #ThinkAortaThinkFamily #AorticDissectionAwareness @JCoselli_MD @keaglemd @EricRoselliMD

Busted! 8 Myths about Acute Aortic Dissection. A new resource from the #THINKAORTA campaign for Aortic Dissection Awareness Month. Pls RT. aorticdissectionawareness.org/news/busted-8-…

@CleClinicHVTI @MarfanFdn @SKalahastiMD @PatrickVargoMD @EricRoselliMD @CCF_CTSRes @CCFcards Thank you, Cleveland community and Cleveland Clinic! ♥️

Thanks to the @MarfanFdn, for making today’s #Cleveland #WalkforVictory a huge success🫀 And to the fantastic community, your dedication & enthusiasm greatly added to the success! It’s not too late to support #AortaEd via team #CLEaorta @ link: give.marfan.org/team/761257

We are stronger together thanks to: @AorticHope @AorticDisorders @JohnRitterFdn @LDSFCanada @RockFromThHeart @ThinkAortaUS @ThinkAorta