January, 2020
Global ARCH News
Global ARCH held its first Annual General Meeting on December 13, 2019 and are delighted to announce the addition of four new board members:
Claire Wilby , Flavia Kamalembo Baturine , Dominique Vervoort , and Farhan Ahmad .

Claire Wilby is an energy and infrastructure lawyer, with a focus on Africa and other Emerging Markets. She is also a congenital heart disease patient.

Flavia Kamalembo Baturine has lived with rheumatic heart disease for 8 years, and is a member of the Rheumatic Heart Disease Support group in Uganda, under the Uganda Heart Institute. 

Dominique Vervoort is a medical graduate from Belgium with extensive experience in the field of global surgery, enrolled in a Master of Public Health and Master of Business Administration at Johns Hopkins University. 

Finally, Farhan Ahmad is a social innovator and philanthropist, and founder and volunteer CEO of Pakistan Children’s Heart Foundation, an NGO focused on building a specialized children’s heart hospital in Lahore, Pakistan.  

All have outstanding involvement in CHD/RHD organizations with leadership roles, and will be a fantastic addition to our organization. Welcome Claire, Flavia, Dominique, and Farhan! You can read their full bios HERE .
Do you lead a congenital heart disease patient group? If yes, the International Consortium of Health Outcomes Metrics  has created a survey to define the outcomes that matter most to to CHD patients and their families. They need your input on whether these measures reflect what patients and families in your country think is important. 

Please note: as a group leader you are encouraged to complete the survey on behalf of the patients you represent. When asked to indicate your role, please select “advocacy professional” or "other" and state you are a group leader. If you have any further questions, or need additional help to complete the survey, please contact info@global-arch.org

Please click HERE to start the survey.
Global ARCH interviews Manish Jain, founder of Congenital Heart Disease India
1. Can you briefly tell me why you started Congenital Heart Disease India and what your top goals are in for the group?
Observing fellow CHD parents, I realized their inclination towards myths and "other options", when clearly none existed. Those options – a herbal extract, an exotic & expensive mushroom, for instance, never made a difference to anyone except the entrepreneurs who promoted them. These notions are not unique to developing countries, as my previous interactions with others and communication with the US-FDA showed. 

The second reason was, I wanted CHD parents not to feel alienated due to their overwhelming emotional. social and financial needs. 
2. What are some of the challenges you face and some of the ways you are addressing them?
A taciturn attitude of CHD patients and parents in India and other developing counties. As a result, I have been open to connect individually. I have asked cardiologists and cardiothoracic surgeons to display information on this support group at their facilities, but it doesn't seem to be happening.
3. What are some of the ways you are helping CHD patients and their families?
We have been answering individual queries and helping families connect with facilities. Several years ago we arranged a continuing medical education event, where some of the perspectives of patients were also discussed.
4. What do you want people reading this to know most about you and Congenital Heart Disease India?
Human sufferings are monochromatic, & CHD India is a global group despite its suffix. I advocate integration of humanities, compassion and empathy in medical curricula especially in countries with adverse doctor-patient ratio.

If you would like to learn more please visit his Facebook page by clicking HERE
International Heart News
Question of the Month:
What are the three biggest challenges facing rheumatic and/or congenital heart patients in your country? Added challenge: answer in under 10 words.

Please email info@global-arch.org and we will post your answers in our next newsletter.
Upcoming Meetings
Our Board Members
President & Chair: Amy Verstappen (US)
Vice-president: Disty Pearson (US)
Finance: Rob Lutter (Australia)
Advocacy: Bistra Zheleva (US)
Communications and Secretary: Shelagh Ross (Canada)
Flavia Kamalembo Baturine (Africa)
Claire Wilby (France)
Hannah Almira Amora (Philippines)
Dr. Vikas Desai (India)
Noémi D. de Stoutz (Switzerland)
Heru Kustiawan (Indonesia)
Dominique Vervoort (US)
Farhan Ahmad (Pakistan)
Medical Advisory Board
Kathy Jenkins, MD, MPH
Disty Pearson, Board Liaison and 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 members please click HERE .