Have you endorsed the Declaration? Do you want to learn more?
Please click
HERE
for more information
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Heart to Heart LIVE
So far we have held 4 hosted webinars plus several Global ARCH Leader's Forums. The feedback thus far has been outstanding!
Disty Pearson, PA-C at the Boston Adult Congenital Heart Center and Global ARCH Vice-President, spoke about
CHD and COVID-19 – What Do We Know So Far?
Fundraising Strategies in the Time of Pandemic: Guidance for congenital heart disease patient groups,
was
hosted by Bistra Zheleva, Vice President of Global Strategy and Advocacy at Children’s HeartLink. She was joined by Amy Basken, Conquering CHD (US), Blanca del Valle, Kardias (Mexico), and Farhan Ahmad, Pakistan Children’s Heart Foundation who spoke about current fundraising challenges and opportunities.
Amy Verstappen, MGH, Global ARCH President, spoke about
The
Declaration of Rights
, and the importance of patient advocacy.
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Professor LIesl Zuhlke, Director of the Children’s Heart Disease Research Unit at the University of Cape Town spoke about
RHD, CHD and COVID-19: A Global Update
.
Copies of the presentations and/or recordings, as well as the registration link for future webinars, can be found
HERE.
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Upcoming Schedule
Friday, July 17 at 8-9 am EST: Leveraging Social Media for High-Level and Patient Advocacy
Dominique Vervoort, MD, physician and aspiring pediatric cardiac surgeon with global surgery background, as well as social media whiz, will discuss using social media for both political and grass-roots change.
August 7 at 8-9 a.m. EST: Global ARCH Leaders Foru
m
This is an opportunity for all of us to share our experiences, learn from each other, and get and receive much needed support. These meetings will be held the first Friday of each month at 8-9 a.m.
To register for any of our webinars please click
HERE
.
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Global ARCH Member SPOTLIGHT
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Brave Little Hearts Namibia
Brave Little Hearts Namibia (BLH Namibia), a member of the Brave Little Hearts Africa, was founded in 2018 by Martha Shiimi Naambo, a TOF survivor and advocate, with the help of cardiologist Dr. Fenni Shidhika and her team at Windhoek Cardiac Clinic.
The organization provides an opportunity for families and CHD patients to support each other, share their experiences, give hope, provide educational information, and raise awareness of congenital heart disease.
To read more about BLH Namibia please click
HERE
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COVID-19 & CHD/RHD Resources
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Our COVID-19 and CHD Fact Sheet is now available in 11 languages! Thank you to all of the organizations who volunteered to translate! We also teamed up with several Canadian heart organizations to develop a COVID-19 and CHD Tip sheet, and have a listing of current scientific articles and other useful resources. You can download all of these resources
HERE
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Women with heart defects experience far more cardiovascular problems during pregnancy than those without, yet only half get a recommended test to assess their heart health before giving birth, according to new research.
Patients who undergo CHS at childhood age are, on average, more disadvantaged from both an educational and professional standpoint compared with the general population, regardless of the severity of the defect.
The members of the World Heart Federation Board bestowed upon Jane Somerville their ‘WHF Award for Outstanding Contribution to Cardiovascular Health’ 2020. Watch the interview.
This nationwide study used the unique Danish registries to estimate the risk of suicide and deliberate self‐harm in patients with congenital heart disease (CHD).
Adults with CHD are more likely to have impaired functional status, biomarker profiles indicative of systemic inflammation and heart failure, and increased risk for death or cardiovascular events if they have major depression, according to an article published in
Journal of the American Heart Association
.
This article
studied the long-term social outcomes after congenital heart surgery performed during childhood.
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President: Amy Verstappen (US)
Vice-president: Disty Pearson (US)
Communications and Secretary: Shelagh Ross (Canada)
Flavia
Kamalembo Baturine (Africa)
Claire Wilby (France)
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Dr. Vikas Desai (India)
Noémi D. de Stoutz (Switzerland)
Dominique Vervoort (US)
Farhan Ahmad (Pakistan)
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Kathy Jenkins, Chair, MD, MPH
Disty Pearson, Vice-Chair
Christopher Hugo Hamman, MD
Babar S. Hasan, MD
RK Kumar, MD
Sivakumar Sivalingam, MD
Liesl Zühlke, MD
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Please keep us in the loop!
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We’d love to hear about what you and/or your organization is doing, and we will help spread the news. Please contact us at
info@global-arch.org
.
If you have a colleague who might like to join please ask them to visit our
website
.
To see our current list of member organizations please click
HERE
.
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