#FindACHD

One Creative Framework & Three Strategic Pillars to Find, Keep & Connect ACHD Patients & Health Teams
✉️ [email protected]

[Global ARCH @globalarchorg]

We're launching our Hearts Around the World campaign at @WHO 77th World Health Assembly. All donations to @DVervoort94 & @kdschmeck will be matched by a generous donor! Please give to support our member #RHD #CHD orgs!
Dom: https://t.co/TVe1nofy3E
Kate: https://t.co/33bfJsvuDo
❤️

[Global ARCH @globalarchorg]

Join us May 27 to for this key discussion about the resources needed to serve children with congenital anomalies globally, & how to advocate with policymakers for their inclusion in the universal health coverage agenda. In-person & online! #UHC #birthdefects

[Rafa Alonso @ralogon]

This week, at the Toronto International ACHD Rounds, Dr. Mertens will discuss new echo techniques to assess intracardiac flow dynamics, myocardial stiffness, and applications of AI in CHD. Join us live at https://t.co/ukil00O1wo #ACHD @TorontoACHD @SKHeartCentre @LucMertens8

[Zipper Sisters @ZipperSisters]

Can we please recognize that Women's health in #ACHD is far more than pregnancy? There's a huge need for research and care (for women's health issues) across the #CHD lifespan that affects QOL!

[#FindACHD @FindACHD]

@CachNetwork

[Michael A. Gatzoulis @MAGatzoulis]

Univentricular Heart Outcomes in Sweden, including 758 patients with HLHS. Read the IJCCHD https://t.co/XPrNM9HxEX @IJCCHD @escardio @AEPCcongenital @ISACHD @bcca_uk @JSabatino86 @sasha_opo @mandalenakis @AmiBhattMD @CandiceSilvers1 @JGrapsa @Bravo__MD @OktayTutarel_MD

[Rafa Alonso @ralogon]

After 50 years of follow up, patients who underwent ASD closure in childhood have:
🔹Same survival than the general population but,
▪️Less that 50% remain event-free (30% symptomatic arrhythmia)
▪️Dilated RV is seen in 45% of patients
https://t.co/NB3UHLwkwJ

[Dr Petra Jenkins @DrPetraJenkins1]

ACHD Training across the Globe
Trainees and new ACHD Consultants please complete this survey 👇
what motivates physicians to pursue a career in ACHD, and to identify factors that may discourage them from doing so.
@cfcamm @TheBJCA @BcsPresident
https://t.co/1uCVjyYbMP

[Rafa Alonso @ralogon]

This week in the Toronto International ACHD rounds, Dr Alsaied will discuss the different treatment options for patients with Fontan Circulatory Failure. Please join us live at https://t.co/DvbdpjZtpd @AlsaiedTarek @TorontoACHD @PMunkCardiacCtr #ACHD

[#FindACHD @FindACHD]

@TomGlenn_3 @Schuch_doc @melissacousino @wernovsky30362 Are there types of CHD where this isn’t the case?

[#FindACHD @FindACHD]

The FindACHD poster at the #8thWCPCCS in Washington, DC.

[#FindACHD @FindACHD]

Thanks #8thWCPCCS for letting me share our ideas. Creating a safety net or providers - the people #ACHD meet through their life journey - will help keep patients in care. Collaboration is key.

[#FindACHD @FindACHD]

FindACHD is excited to be presenting at the #8thWCPCCS2023 on Partnering for life-long care: #FindACHD - Aug 30. Should be fun!

[#FindACHD @FindACHD]

Please join us this Wednesday (April 26) @ 10amEST to hear more about this largely misunderstood topic. It's a perfect opportunity for your professional or lived experience comments and insights. Pls register https://t.co/hEKy6v2m03

[#FindACHD @FindACHD]

Looking forward to the #WCPCCS2023 & connecting with @globalarchorg leaders. Also presenting @FindACHD and our ideas for improving care for people with #CHD. Better communication, education, & mental/physical supports. Should be fun! https://t.co/2QgpCPy9Hn

[#FindACHD @FindACHD]

Wow, we're clearly onto something! Suggestions for improvement include better communication, more #CHD education, simplified info, mental health/support, support groups, better transition, improved access, etc. Let's make this happen ❤️ @CachNetwork
https://t.co/jN7lhDEnBG

[#FindACHD @FindACHD]

This is why it’s so important to start educating non-ACHD physicians about the special needs of these patients, to create a safety net of providers to help keep them in lifelong care. Transition programs only reach a small % of patients. The rest are lost to care.

[Conquering CHD @conqueringchd]

Many adult CHD patients report that their defect was "cured” by a childhood surgery, with years of feeling healthy and no major cardiac symptoms. These factors can lead to a decade out of care for many adults with CHD.

Use your #CHDVoice and keep CHD patients in care for life!

[British Adult Congenital Cardiac Nurse Association @theBACCNA]

It's #CHDawareness week

What is congenital heart disease & why do we need to raise awareness?

Follow @theBACCNA this week for more info on #CHD

#ACHD

[#FindACHD @FindACHD]

An excellent @TorontoACHD presentation by advanced NP @Sarah_R_Ellison about the gaps in #CHD care, her personal experience, and her work as a researcher in bridging those gaps using big data and awareness. This is what @FindACHD is all about. https://t.co/lAzI4l5gjN

[#FindACHD @FindACHD]

An excellent @TorontoACHD presentation by advanced NP @Sarah_R_Ellison about the gaps in #CHD care, her personal experience, and her work as a researcher in bridging those gaps using big data and awareness. This is what @FindACHD is all about. https://t.co/lAzI4l5gjN

[#FindACHD @FindACHD]

Caregiving Strategies: Caring https://t.co/zOX6zk0Fgh