Dear Friends,
As COVID-19 continues to spread, each of us face unprecedented challenges and uncertainty. CHD and RHD organizations around the world have paused planned activities as they struggle to address the virus’s potential impact on their community. Global ARCH’s regional events have all been cancelled, and our advocacy for
Global CHD and RHD Rights
is on hold as the pandemic demands the world’s attention.
But this difficult moment also offers an opportunity to bring together the global CHD and RHD community to confront our challenges together. To do so, we have initiated the
COVID-19 Project
to offer resources, education, collaboration, and support. Here’s how you can help:
- Let us know about COVID-19 resources for the RHD and CHD community. These can be materials from your organization or other information you have found useful. These will be compiled at Global ARCH’s COVID-19 resource library.
- Help us get our CHD and COVID-19 Fact Sheet to those who need it. Share it on social media, on your website, and with CHD and RHD organizations. Translate and modify it as needed (and please send us your translated copy and we will post it on our website) .
- Share knowledge, experience, and support with other leaders by participating in our bi-weekly Heart to Heart Live Zoom meetings for CHD and RHD leaders and supporters every Friday from 8 am-9 am US EDT. These meetings will offer a chance to participate in live updates from CHD and RHD experts, and connect you to other heart leaders around the world. Each meeting will focus on a topic of interest, and well as offer opportunities for sharing and group updates. This can be a difficult time to lead, especially for those of us directly impacted by childhood-onset heart disease. Coming together can help strengthen our hearts and minds as well as our organizations.
Please let us know about COVID-19 activities
that other CHD and RHD organizations can participate in, such as surveys and research initiatives.
Together we can get through this, one day at a time.
In solidarity,
Amy
President, Global ARCH
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Heart to Heart LIVE Schedule
Friday, May 1st at 8-9 am eastern time
CHD and COVID-19 - What do we know so far?
Disty Pearson, PA-C
at the Boston Adult Congenital Heart Center and Global ARCH Vice-President, will offer a brief overview of the information available thus far, followed by Q and A and discussion.
Friday, May 15 at 8-9 am eastern time
Fundraising Strategies in the time of Pandemic
Bistra Zheleva, Vice President of Global Strategy and Advocacy at Children's HeartLink, will present on current fundraising challenges and opportunities, followed by an opportunity for discussion and strategy-sharing.
Friday, May 29 at 8-9 am eastern time
Peer Sharing
This is an opportunity to share experiences, learn from each other, and get and receive support.
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Global ARCH COVID-19 & CHD Fact Sheet
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We have created a
COVID-19 & CHD fact sheet
based on scientific recommendations, in collaboration with
Children's HeartLink
.
We encourage you to share it with your community, and translate it into your language if possible. They are currently available on our website in English, Portuguese, Spanish, Arabic, and Japanese, German, and Malay (with more available soon). Please let us know if you need assistance and we will try to help. If you do translate it please send us a copy and we will post on our website. A BIG thank you to the generous volunteers who worked so hard on the translations and have sent us their copies to post.
We have also posted a wide variety of COVID-19 and CHD/RHD sources and resources on our website (see below) and will continue to add to them throughout the pandemic.
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Global ARCH Member SPOTLIGHT
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CUORE MATTO - Switzerland
By Noémi de Stoutz, MD
Like most organisations, due to the Corona pandemic,
CUORE MATTO
had to cancel or postpone all informal, educational and official meetings. Instead, we are holding monthly regional informal meetings online
Since the quarterly publication of the journals has been interrupted, we are publishing a weekly newsletter online and by e-mail full of information, quizzes, ideas for handicrafts and exercising at home, jokes, and challenges to solve as a group (ex: Fotocollage of selfies with a message - below).
We also hold a weekly telefone hotline hosted by a board member, and I am available to answer any medical questions.
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Swiss healthcare system:
The government enforced restrictions gradually according to new scientific information, availability of supplies, and how its citizens reacted to the changes. Whenever a measure is not taken seriously enough, regulations become stricter within days. Unfortunately, the risk of persons over 65 years of age has been stressed so much that younger people tend to feel immune from the virus.
The part of Switzerland that is closest to northern Italy has been hit first, and very violently. They now seem to be passing the summit of the wave.
In other places the hospitals had time to prepare and it appears that things are going rather smoothly. For ACHD appointments, Zurich University Hospital an extra entrance is dedicated to ACHD only; they are met at that door and have their entire consult without meeting any other patients.
The Swiss ACHD working group and CHD umbrella organisation have issued statements for CHD patients, addressing different CHD diagnoses. Also, for those who need it, a form for employers demanding the transfer into home-office has been provided.
I and others are coping despite the restrictions and anxiety.
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More COVID-19 & CHD/RHD Resources
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President: Amy Verstappen (US)
Vice-president: Disty Pearson (US)
Finance: Rob Lutter (Australia)
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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