RHD Support Group

Uganda Heart Institute
Global ARCH / Our Member Orgs / RHD Support Group

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.

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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.