Cardiac Sarcoidosis Consortium

[Nisha Gilotra @ngilotraMD]

Please join the FSR @StopSarcoidosis on 6/8 for an exciting and interactive symposium on hot topics in #CardiacSarcoidosis @JonChrispinMD @fsheikh22 @mpsotka @JLovellMD @JanMGriffin @sanjaydivakaran @jordanakron1 @cshenoy3

[Cardiac Sarcoidosis Consortium @CSCregistry]

Show your support for #worldsarcday! Thank you to the all the sarcoidosis patients who support #sarcoidosis research and awareness!💜

[FSR @StopSarcoidosis]

Today we celebrate World Sarcoidosis Day! In honor of the international day dedicated to #sarcoidosis awareness, we wear purple to show our support for those who fight this disease every day. Join us in showing support today and post a picture of you in purple swag!

[FSR @StopSarcoidosis]

Cardiac sarcoidosis affects more than 10% of people with #sarcoidosis in the United States, and perhaps as many as 25%. Because heart problems can be very serious, everyone who has sarcoidosis should be screened for cardiac sarcoidosis.

Learn more: https://t.co/rQulyrdZ9O

[Cardiac Sarcoidosis Consortium @CSCregistry]

Another insightful Cardiac Sarcoidosis Consortium site-wide call! Thank you to all sites and investigators for your continued support and dedication! #cardiacsarcoidosis #sarcoidosis #csc

[AntonioAbbate @AbbateAntonio]

Many more trials needed in cardiac sarcoidosis
Very nice editorial from @RonBlankstein @sanjaydivakaran From @jaccjournals https://t.co/lv6pkv8loQ
@jordanakron1 - planning for MAGIC-ART-2 at @VCUHealthHeart @CardioUva @UVACVRC

[FSR @StopSarcoidosis]

In Episode 72 of the FSR Sarc Fighter #podcast, Regina Gordon shares the story of how #sarcoidosis has curtailed her life for decades. But Regina is not willing to give up!

Listen now: https://t.co/kBFqEUs5Zz
#chronicillness #raredisease #sarctwitter #medtwitter

[FSR @StopSarcoidosis]

Are you interested in being a voice or providing support for the #sarcoidosis community in your area? Consider using your skills and applying to become a an FSR Global Sarcoidosis Clinic Alliance Volunteer! https://t.co/J5G1RP8IqN

#sarctwitter

[Cardiac Sarcoidosis Consortium @CSCregistry]

Update on CSC in European Heart Journal! Thank you to all the CSC centers! @True_EP @KennethEllenbo1 @jordanakron1 @ehj_ed @rhythmkris @NoStaticAtAll @PlatonovPyotr @konsiont @DRosenth_ @cshenoy3 @EpRoukoz @BhanAdarsh @VCUHealthHeart @StopSarcoidosis https://t.co/GQ1KplwFEd

[VCU Health @VCUHealth]

Offered through @VCUHealthHeart, this program brings students to MCV Campus for rotations and mentored research experience. https://t.co/le9Y2J9S1L

[FSR @StopSarcoidosis]

FSR is pleased to partner with ATS in order to provide funding support for this important research project. We congratulate Dr. Ghosh and look forward to the critical learnings that will stem from his research efforts!

[FSR @StopSarcoidosis]

TODAY IS THE LAST DAY TO REGISTER FOR THE SUMMIT! Watch the video below for a special sneak peek of the summit experience: https://t.co/gFTMdxuGGu

Learn more and register here: https://t.co/cJI1lp8DLM

#sarcoidosis #raredisease #sarcevent #sarcoidosisawareness

[FSR @StopSarcoidosis]

Check out our new blog, as Patient Advocate Susan writes about her experience attending the Summit and what she is most looking forward to this year: https://t.co/OWfg7umKc7

Read the Summit FAQ for learn more about the Summit: https://t.co/7cptv9xyMQ

#sarcoidosis

[VCU Health Pauley Heart Center @VCUHealthHeart]

It is our great honor to announce the 2023 Dr. Carolyn McCue Award for Woman Cardiologist of the Year will go to Annabelle Santos Volgman, MD, FACC, FAHA. ❤️🎉https://t.co/judKOiRo6k @avolgman @RushMedical @jordanakron1 @PAshleyMD @SharonneHayes

[AntonioAbbate @AbbateAntonio]

Welcome @JamesMbualungu to #MedTwitter and to @UVACVRC - excited to have him as part of the research team here @UVACVRC after a long and successful partnership @VCUHealthHeart, wishing him best of luck for medical school @uvamedicine

[Cardiac Sarcoidosis Consortium @CSCregistry]

Ueberham et al. from the University of Leipzig examined 62 patients with suspected cardiac sarcoidosis and compared the WASOG, HRS, and JCS criteria.

They also found a substantial disagreement among the current diagnostic recommendations.

https://t.co/eqwic33AzQ

[FSR @StopSarcoidosis]

Looking for insights on how to manage #fatigue? Or tips on how to navigate the healthcare system?

Life Hacks: Unveiling Your Best Life with #Sarcoidosis at this year’s FSR Global Sarcoidosis Virtual Patient Summit is for you! Learn more: https://t.co/RPiCatVitk

#sarctwitter

[William H. Sauer, MD @True_EP]

Great to see cardiac sarcoidosis getting airtime. In 2007, Frank Bogun met me at an HRS poster (ECGs in Sarcoidosis). We committed to collaborating and found out that Jordana Kron was collecting data on ICDs with @KennethEllenbo1…from there, @CSCregistry was born.

[FSR @StopSarcoidosis]

Newly diagnosed and long-term #sarcoidosis patients and caregivers are invited to attend FSR's Global Virtual Patient Summit on July 30 - 31!

Early Bird Reg is $60 until June 30. Learn more and register: https://t.co/cJI1lp8DLM

#sarcoidosisawareness #raredisease #sarctwitter

[FSR @StopSarcoidosis]

Newly diagnosed with sarcoidosis? Join FSR TODAY May 31, 2022 from 5:00 PM – 6:00 PM CT for an Introduction to Sarcoidosis virtual event!

Learn more and register: https://t.co/a9B1lB7yMg

#sarcoidosis #sarcoidosisawareness #virtualevent #raredisease #sarctwitter

[Cardiac Sarcoidosis Consortium @CSCregistry]

In conclusion, cardiac sarcoidosis can be difficult to diagnose. Future research should focus on identifying ways that are simpler, and validated against pathology data and patient outcomes.

@EpRoukoz @LisaVonWald1 @cshenoy3 @bmaneesh @PerlmanMD

[Cardiac Sarcoidosis Consortium @CSCregistry]

Continuing our tweets from the University of Minnesota’s multidisciplinary cardiac sarcoidosis program, today we have a tweetorial on how cardiac sarcoidosis is diagnosed. 🧵

@umnsarc @StopSarcoidosis #CardiacSarcoidosis #Sarcoidosis

[Cardiac Sarcoidosis Consortium @CSCregistry]

In an abstract from the @CSCregistry presented at ACC 2022, only 60 of 587 patients met all 4 of JMHW 1993, JSSOG 2006, HRS 2014, and JCS 2016 criteria.

The two Japanese criteria were more likely to identify patients who experienced an adverse cardiac event.