Global ARCH Board Members Needed
Do you have passion for creating a common voice to improve the lives of CHD and RHD patients? Are you committed to helping people with childhood-onset heart disease thrive? Do you have experience assisting, representing, or advocating for the needs of CHD and/or RHD patients? Global ARCH is looking for candidates to serve on our Board of Directors. For more information and application materials please click HERE. Deadline for applications is November 15th.
|
|
Have you signed the Declaration of Rights for Individuals with Childhood-Onset Heart Disease? We believe that: |
|
Every person with childhood-onset heart disease has the right to health.
They have the right to heart care that is:
Affordable Safe Patient-centered
Accessible High-quality Life-long
They have the right to well-being including:
Protection from stigma Education Medical privacy
Social inclusion Employment Social benefits
If you believe in these principles please click HERE to read more and to sign the Declaration.
NEW: Declaration Information & Action Toolkit
We've created a few new tools to help you support the campaign for CHD and RHD health rights:
- Declaration overview
- Actions you can take
- Social media toolkit
- Declaration summary
- Fact sheet
- Full Declaration
- About Global ARCH
To read and/or print off please click HERE.
|
|
Global ARCH becomes an official 501(c)(3) charity!
It took a while but we got there! Thanks to a U.S. government shutdown, followed by Covid-19, our application took longer than we hoped. But we're official now, and can begin taking donations and issuing tax receipts to donors. All funds received will be used to further our mission to improve worldwide life-long outcomes in childhood-onset heart disease through empowering patient and family organizations.
|
|
Global ARCH participates in WORLD HEART DAY
Global ARCH reached out to its member organizations to collect photos of kids and adults with RHD and CHD to create a social media event for our Declaration of Rights message. Over several days we posted images on Twitter, Facebook, and Instagram. On Twitter, the campaign reached 11,700 people and lead to 203 profile visits. Our Facebook posts reached 2,470 people with 4,040 commenting or sharing. We were a bit late with our Instagram posts but we did manage to reach about 50 people with each post. We'll continue to use these wonderful photos in future campaigns. A huge THANK YOU to everyone who sent them in. If we haven't used yours yet we will soon!
|
|
Global ARCH board members present at ACHD Symposium |
|
Amy Verstappen, Disty Pearson, and Kathy Jenkins were all invited to speak at the 30th International Symposium on Adult Congenital Heart Disease as part of the session on ACHD in Lower Resource Environments. The conference was held via Zoom and hosted by the Cincinnati Children's Hospital.
Amy, Global ARCH president, spoke about the role of patient and family organizations in promoting life-long heart care in low- and middle-income countries. She said that even in high-income countries the majority of congenital heart disease patients are lost to care before the teen years. There is a big opportunity in countries that are just developing CHD care to make sure this doesn't happen - by making sure the "life-long" message is well communicated to families during the initial interventions. Amy also spoke about the Declaration of Rights and urged organizations and individuals to sign on.
Disty, Global ARCH VP, spoke in collaboration with Global ARCH Medical Advisory Board member Dr. Kathy Jenkins about the International Quality Improvement Collaborative (IQIC) for CHD - a group of healthcare teams around the world (currently 74 sites in 27 countries) who work together to reduce mortality and morbidity in CHD in low- and middle-income countries.
It was wonderful to be so well represented at this major international conference!
|
|
Heart to Heart LIVE
November 6 @ 8 a.m. EST CHD/RHD Patient Organization Leaders Forum via Zoom. Please click HERE to register.
November 20 @ 8 a.m. EST: Technology and how you can get discounts for your organization, with Farhan Ahmad, Founder and volunteer CEO of Pakistan Children’s Heart Foundation, and board member of Global ARCH. To register click HERE. More topics to be announced soon.
Past topics include:
-
Leveraging Social Media for High-Level and Patient Advocacy by Dominique Vervoort, MD, physician and aspiring pediatric cardiac surgeon
-
What We Know, Don’t Know, and Hope to Know Soon about the Impact of COVID-19 on CHD/RHD Patients World-Wide, with the esteemed Professor LIesl Zuhlke, Director of the Children’s Heart Disease Research Unit at the University of Cape Town
-
A presentation on The Declaration of Rights, and the Importance of Patient Advocacy with Amy Verstappen, MGH, Global ARCH President
-
Fundraising Strategies in the Time of Pandemic: Guidance for Congenital Heart Disease Patient Groups, with Bistra Zheleva, Vice President of Global Strategy and Advocacy at Children’s HeartLink, and
-
CHD and COVID-19 – What Do We Know So Far? with Disty Pearson, PA-C at the Boston Adult Congenital Heart Center and Global ARCH Vice-President
All presentations can be viewed HERE.
|
|
Global ARCH Member SPOTLIGHT |
|
Brave Heart
We are delighted to be featuring Brave Heart, a registered NGO in Lebanon, founded in 2003. Brave Heart provides grassroots financial assistance for life-saving surgeries to underprivileged children diagnosed with congenital heart disease (CHD). One hundred percent of all donations are used to cover the cost of surgeries and medical interventions without any form of discrimination, regardless of gender, race, ethnicity, nationality or religious affiliation.
|
|
To date, Brave Heart has funded over 4,000 surgeries for children in Lebanon diagnosed with life-threatening heart conditions, at an average of 250 patients annually.
To read more about Brave Heart and to watch their video please click HERE. You can also read about other Global ARCH Member Spotlight organizations HERE.
|
|
This article, published by Medpage Today, discusses the various factors contributing to relatively low number of cases of Covid-19 in a continent "scarred by the history of the AIDS pandemic, Ebola outbreaks, and other devastating infectious diseases."
This small retrospective study, published on October 14, 2020, suggests that people born with a heart defect (excluding those with a genetic disorder) who developed COVID-19 symptoms had a low risk of moderate or severe COVID-19 infection.
This was the first surveillance effort of adults with CHD-coded inpatient and outpatient health care encounters in 3 U.S. geographic locations using both administrative and clinical data sources. This information will provide a clearer understanding of health care use in this growing population.
Published in June, 2020, this is a summary helpful in managing patients with congenital heart disease infected with COVID-19.
Vivien Thomas was 19, a carpenter's apprentice, when he took a temporary job as a lab assistant to Dr. Alfred Blalock. The partnership lasted 34 years, and together the two men would invent heart surgery. It's a fascinating story and one that everyone who's interested in CHD should know about.
Differences in access to medical care and treatment contribute to conditions that disproportionately hurt minority children.
Published July, 2020, the study found that patients who undergo congenital heart surgery 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.
Published July, 2020 in Congenital Cardiology Today, this thorough article covers what transition is and how to start a program.
Learn from the experiences and perspectives of a patient and a psychologist about how they prevent and manage depression and anxiety. Information and resources are available through the Congenital Heart Public Health Consortium community.
Published in July, 2020, this study shows that the most common underlying causes of death differed by lesion severity. Those with severe lesions most commonly died from underlying CHD, whereas those with non-severe disease more commonly died from non‐CHD causes.
Published in July, 2020, this study showed that in a registry where employment status was routinely captured, only 37% of adult CHD patients aged 18–64 years were employed, with older patients, Black patients, and single patients being less likely to be employed. Further work is needed to consider how enhancing cardiology follow-up for adults with CHD can integrate support for employment.
This is an educational series designed for patients and families, by patients and families. It is a regular opportunity for the community to engage with experts on specific topics. Courses will be held virtually, some live and some recorded. Live sessions will require registration, which is free to all participants.
|
|
President: Amy Verstappen (US)
Vice-president: Disty Pearson (US)
Communications and Secretary: Shelagh Ross (Canada)
Flavia Kamalembo Baturine (Africa)
Claire Wilby (France)
|
|
Dr. Vikas Desai (India)
Noémi D. de Stoutz (Switzerland)
Dominique Vervoort (US)
Farhan Ahmad (Pakistan)
|
|
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
|
|
Please keep us in the loop! |
|
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.
|
|
|
|
|
|
|
