Global ARCH Webinars

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Upcoming Webinars

September 29 at 9-10 a.m. EST:  Global ARCH LIVE: Advocating from the Heart

On World Heart Day (September 29), CHD and RHD patients and families around the world come together to raise awareness of their unmet needs. But how do we use that awareness to achieve needed policy change?  This webinar, in partnership with the NCDI Poverty Network, focuses on how patient and family leaders can initiate and sustain government-directed health advocacy. Maia Olsen, Advocacy Director of the NCDI Poverty Network, will offer an overview of activities that led from the WHO’s adoption of the RHD resolution to regional efforts around the PEN-Plus strategy. Annamarie Saarinan, CEO of the Newborn Foundation, will describe the successful campaign to achieve universal pulse oximetry screening the United States. Tendai Moyo, President of Brave Little Hearts Zimbabwe, and Anu Gomanju , NCDI Poverty Network Advocacy Fellow, will discuss their activities in Zimbabwe and Nepal.  A panel discussion will follow. 

 

September 2 at 8-9 a.m. EST:  Global ARCH Leaders’ Forum

The Global ARCH Leaders’ Forum takes place the first Friday of the month at 8 a.m. EST via Zoom, unless otherwise noted.  It is an opportunity for our member organizations to meet and  share information about their organizations and activities with other Global ARCH members. Video or free audio calling is available for many countries. We will send an email and/or WhatsApp reminder to our members with the link to register for the Forum. We’re looking forward to seeing you (or hearing you)!

RESCHEDULED: TBA

Global ARCH LIVE

Living with Rheumatic Heart Disease

What is RHD and how can people with a diagnosis live a healthy life? Living with RHD can limit one’s daily activities but it does not mean the end of living one’s dreams. Tune in to hear Uganda’s Flavia Kamalembo Batureine and Namibia’s Lavinia Ndemutila Ndinangoyetwo RHD patients and active patient advocates, share their stories. Learn about RHD and how to live with it, and get inspired to chase your own dreams. Please register.

Past Webinars

September 24 at 8-9 a.m. EST:  Global ARCH LIVE

CHD and RHD: Planning for long-term health
“Will my child have a normal life?” “Can I have a baby?” These are just some of the questions that congenital heart disease and rheumatic heart disease leaders get asked by patients and families. Join Global ARCH President Amy Verstappen as she presents key resources and information, including access to published guidelines, so that leaders can help their community members plan for long-term health.

May 8 at 7:30-8:30 a.m. EST – How to: Use Global Burden of Disease Study Data to Empower Your Advocacy

Health data is essential for health advocacy. Communicating with policy makers starts with describing the “burden of disease” in their area, such as death and disability. The Global Burden of Disease Study database contains extensive country-specific congenital heart disease and rheumatic heart disease health data. This webinar will demonstrate how to access and use this data to strengthen your awareness and advocacy efforts. 

Moderator: Bistra Zheleva, VP of Global Strategy and Advocacy, Children’s HeartLink

Presenter: Dominique Vervoort, MD, John’s Hopkins Bloomberg School of Public Health

February 12 at 8-9 a.m. EST – Advocacy in Action: Advocating for Childhood-Onset Heart Diseases at the National Level
Global ARCH board members Bistra Zheleva, VP of Global Strategy and Advocacy at Children’s HeartLink and Ruth Ngwaro, co-founder of Kenya Mended Hearts Patients Association will discuss their recent advocacy success stories. Mended Hearts Kenya has been successful in getting the government to pay for CHD surgery, and Children’s HeartLink in the expansion of screening and surgery in Kerala, India.

November 27 at 8 a.m. EST: Technology and how you can get discounts for your organization
Farhan Ahmad, Founder and volunteer CEO of Pakistan Children’s Heart Foundation, and board member of Global ARCH, will discuss popular software options for non-profits and how you can get them at a discount. Topics include:

  • What software companies provide to charities
  • How much money a charity can save effectively using free of charge software
  • How a free assessment can help to grow a system
  • Essential applications that can automate routine tasks

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.

Tuesday, June 23 at 8-9 a.m. EST: RHD, CHD and COVID-19: A Global Update
Join Professor LIesl Zuhlke, Director of the Children’s Heart Disease Research Unit at the University of Cape Town, as she talks about what we know, don’t know, and hope to know soon about the impact of COVID-19 on congenital and rheumatic heart patients world-wide.

Friday, May 29 at 8-9 a.m. EST: The Declaration of Rights, and the importance of patient advocacy. Amy Verstappen, MGH, Global ARCH President, will speak about how in this time of Covid-19 our population is even more vulnerable, and the need for a Declaration of Rights of Individuals Affected by Childhood-Onset Heart Disease has never been greater. Join us to learn how you can make an impact.

Friday, May 15 at 8-9 am EST:  Fundraising Strategies in the Time of Pandemic: Guidance for congenital heart disease patient groups
Bistra Zheleva, Vice President of Global Strategy and Advocacy at Children’s HeartLink, presents on current fundraising challenges and opportunities, followed by an opportunity for discussion and strategy-sharing. She is joined by Amy Basken with Conquering CHD (US), Blanca del Valle with Kardias (Mexico), and Farhan Ahmad with Pakistan Children’s Heart Foundation – all very successful charities.

Friday, May 1st at 8-9 am EST: 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.

September 24 at 8-9 a.m. EST:  Global ARCH LIVE

CHD and RHD: Planning for long-term health
“Will my child have a normal life?” “Can I have a baby?” These are just some of the questions that congenital heart disease and rheumatic heart disease leaders get asked by patients and families. Join Global ARCH President Amy Verstappen as she presents key resources and information, including access to published guidelines, so that leaders can help their community members plan for long-term health.

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