February, 2020
Global ARCH News
Global ARCH launches first of its kind Declaration to highlight disparities in RHD/CHD care worldwide and need for government action
In conjunction with CHD Awareness Week, Global ARCH reached out to global CHD/RHD organization leaders to sign the Declaration of the Rights of Individuals with Childhood-Onset Heart Disease , the first document of its kind to be released. It asserts that every person with childhood-onset heart disease has the right to receive all needed services to reach their full potential. The Declaration outlines specific actions that governments should take ensure that even the most marginalized populations have access to the highest quality level of healthcare, social, and economic support. We believe this gives those affected by congenital and rheumatic heart disease a powerful new advocacy and awareness tool to use with government and the general public. We encourage you to sign it, and share it with other individuals and organizations that share our commitment to achieving life-long health for people living with RHD and CHD. To read the full text and to   sign the Declaration please click  HERE .
CHD Awareness Day social media blitz!
In some parts of the world, CHD Awareness Week ran from February 7-14, in conjunction with February Heart Month. In celebration, Global ARCH ran a social media campaign drawing attention to its Declaration of Rights document. It also partnered with Canada's Heart & Stroke Foundation to create and share a CHD Transition Tip Sheet, which can be accessed and downloaded HERE . Our 22 Twitter posts throughout the campaign period resulted in over 14K views - helping us to raise awareness about the rights of patients, highlighting the disparities in access to care for people with CHD and RHD.
RHD Support Group-Uganda Heart Institute
Please tell us about the RHD Support Group-Uganda Heart Institute
It was formed in 2015 by a group of patients diagnosed with RHD, and supported by doctors and nurses at Uganda Heart Institute (UHI) Mulago. It is composed of patients both that have undergone surgery and those that have not yet acquired it.

What is the mission of the organization?
The group was mainly formed to support people living with RHD and to fight RHD in Uganda through awareness programs, bringing hope to patients, caregivers, and the community.

Future goals are to:
  • Create other patient support groups in the satellite clinics established by UHI in Uganda in Gulu, Lira, Mbarara, and Entebbe
  • Create a strong platform for the existing RHD patients to provide peer-to-peer social and emotional support, and guidance for a healthy lifestyle
  • Raise a collective voice together with UHI Mulago to fight against RHD

What are some of the challenges you face?
Challenges include a lack of financial support to reach out to all our targeted community and to carry out our activities consistently. This has been addressed by soliciting funds from friends and support group members’ small contributions. Grant proposals have also been written to both local and international organisations for support, though this has not yet been a success.

Also, the RHD population is sparse and the use of local herbs is common, so we are addressing this by linking them to our community outreach to create more awareness about the disease, however so far this has only been done on a small scale.

What are you most proud of?
We are very proud about the group because it has given us extensive health knowledge so that we are familiar with RHD. The awareness part makes us proud. Letting children know about RHD is important. Some of us didn’t get the opportunity to listen to those messages while in school. and maybe life would be different if we had known.
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.
Some of the answers we received:

  • You are not alone. Open up and raise concerns. Follow evidence-based medicine

  • Not everything needs to be done

  • Follow-up is needed; Symptoms may occur later in life; See the doctor and learn about your CHD

  • You can live to achieve your dreams with better health care. You can prevent RHD if RHF is treated well. Psychosocial support is very important for patients to live with a positive attitude to life

  • The most important information for RHD Patients is to know what RHD is, where it starts, how is it treated, and if not treated what are the consequences

  • You can't prevent CHD but if people get prompt good care they can do well. And if they don’t many will have further heart damage and die

Thank you to all for sending in your responses!

This month's question: If your organization had all of the funds you wanted what are the top priorities you would address?

Please email info@global-arch.org or post on our Facebook page 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)
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 member organizations please click HERE .