Global ARCH Webinars

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Upcoming Webinars

February 2, 2024 at 9 a.m. EST:  Leaders’ Forum 

We will start off with a Global ARCH update and then open it up to hear your questions, concerns, and ideas.  A reminder that our monthly Leaders’ Forum is a fantastic opportunity to learn from others, to give and get support, and to share ideas. It’s a great way to network too! The sessions are open to all Global ARCH member organization leaders, and are held the first Friday of the month at 9 a.m. EST on Zoom. Video and call-in options are available for most countries. Registration is required.

Past Webinars

December 1 at 9 a.m. EST:  Global ARCH LIVE: The Stigmatized Heart and its Impact on Mental & Physical Health

Join us to learn more about the impact of stigma on patients living with childhood-onset heart disease. Many people don’t realize that a birth defect can have lifelong impact on a person’s mental and physical health, including employment opportunities, marriage and family life, and access to social services. Our expert panelists will discuss their personal experiences with stigma and that of their peers, and share insight into why it happens and what can be done about it. The presentation will be followed by a Q&A. Please register below.

Panelists: 

Malin Berghammer, PhD Nurse, Researcher, & CHD patient advocate from Sweden

Grace Jerald, CHD patient advocate & founder of CHD Malaysia

Cecilia Ramirez, parent advocate for a CHD child & VP of Fundación Corazones Luchadores in Chile

Appu K. George, CHD patient advocate from India

Josef Nashilongo, RHD patient advocate from Namibia

Moderator: Dr. Edward Callus, PhD in Clinical Psychology and psychotherapy trainer, University of Milan.pa

June 13 at 7 a.m.EST: Global ARCH LIVE: Improving Global Inequities in Pediatric and Congenital Heart Care

This webinar highlights the global burden of disease for congenital and rheumatic heart disease and the challenge of accessing treatment in low- and middle-income countries. It also introduces the Call to Action campaign, which will be introduced at the 8th World Congress of Pediatric Cardiology & Cardiac Surgery (WCPCCS) in August, 2023. The webinar presenters are Bistra Zheleva, VP of Global Strategy and Advocacy, Children’s HeartLink; Dr. Jeffrey Jacobs, Professor of Surgery and Pediatrics, University of Florida, and Co-chair of the WCPCCS; Dr. Kathy Jenkins, Senior Associate in Cardiology, Department of Cardiology, Executive Director, Center of Applied Pediatric Quality Analytics, Boston Children’s Hospital, Professor of Pediatrics, Boston Medical School. Invited panelists are Mr. Farhan Ahmad, CEO Pakistan Children’s Heart Foundation; Dr. Sandra Mattos, Maternal-Fetal Cardiac Unit, Real Hospital Portugues, Brazil, and Sreehari M. Nair, Indian Department of Health and Family Welfare, Government of Kerla, India. The webinar is moderated by Amy Verstappen, President of Global ARCH.

April 26 at 10 a.m. EST: Global ARCH LIVE: The Life-long Care Needs of Simple CHD

Did you know that even simple CHD can pose serious health problems later in life? Studies have shown that these patients are at far higher risk of heart attack, stroke, heart failure, arrhythmias, and complications during pregnancy than the general population. Join us to learn more about simple CHD life-long care needs and prospects, followed by case presentations from India, and Q&A. Moderated by Global ARCH president Amy Verstappen. Featuring Dr. Sasha Opotowsky, Director, ACHD Program, Cincinnati Children’s, Boston; Dr. Navaneetha Sasikimuar, Associate Professor, Amrita Institute Med Sciences and Research Centre, India; Dr. Francis Flynn-Thompson, Pediatric Cardiac Surgeon, Boston Children’s Hospital; Dr. Babar Hasan, Professor and Chair, Sindh Institute of Urology and Transplantation (SIUT), Pakistan. Presented in partnership with Children’s HeartLink, Heart University, and the International Society for Adult Congenital Heart Disease (ISACHD).

 

November 9 at 10-11 a.m. EST:  Global ARCH LIVE: Promoting well-being in CHD: A global perspective

Living with a serious lifelong health condition can lead to significant mental health challenges. Learn more about these challenges from our four panelists – Dr. Laila Ladak, associate professor and nurse scientist, The Aga Khan University in Pakistan, and Dr. Adrienne Kovacs, clinical psychologist and co-author of the AHA Statement on Mental Health Outcomes and Interventions for People with CHD. Dr. Liza Morton, psychologist and CHD patient joins co-author Tracy Livecchi, a social worker and CHD patient, to discuss their new book Healing Hearts & Minds, published by Oxford University Press. Lastly, Grace Jerald, CHD patient and founder of CHD Malaysia, shares her patient perspective. This webinar is in partnership with the International Society for Adult Congenital Heart Disease (ISACHD). A panel discussion will follow. 

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 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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Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).

 

Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.