Our Projects | Rowan’s Down Syndrome Programs in Uganda

At Rowan’s Down Syndrome Awareness Centre (RDSAC), our Down syndrome programs in Uganda are designed to deliver lasting impact for children and families. Through initiatives such as speech therapy, medical support, caregiver training, inclusive education, and livelihood empowerment, we provide holistic support that improves quality of life and promotes independence. Our community outreach and awareness campaigns continue to reduce stigma while expanding access to essential services across the Bunyoro region and beyond.
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APPROX. 50000LIVE WITH DS
Across Uganda, an estimated 50,000 individuals live with Down syndrome, many of whom face stigma, limited access to healthcare, and insufficient support systems. In the Bunyoro sub-region alone, over 1,100 individuals are affected, yet only about 11% currently access structured support programs, leaving the majority without consistent therapy, medical guidance, or family support. Rowan’s Down Syndrome Awareness Centre (RDSAC) is committed to closing this gap by expanding access to care, strengthening families, and promoting inclusion for every individual.

Our Initiatives | What We Do

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Awareness and Advocacy

We raise public understanding of Down syndrome through community outreach, radio programs, school engagements, and national events such as World Down Syndrome Day (March 21st) and Down Syndrome Awareness Month (October). To date, we have conducted awareness activities across four districts and one city in Midwestern Uganda, including training in over 46 health centers. Our goal is to reduce stigma and promote inclusion in society.
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Therapy and Medical Support

We provide essential services, including monthly speech therapy, early childhood support, and basic medical screening (such as heart and thyroid checks). We also guide families to access specialized care when needed. Currently, we support over 120 registered individuals with Down syndrome, tracking their progress through a digital database system.
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Family and Community Support

We bring together families through four established support groups across Hoima, Masindi, Kikuube, and surrounding areas. These groups provide a safe space for sharing experiences, peer learning, and emotional support, helping families navigate the challenges of care.

Livelihood and Empowerment Programs

We support families and caregivers with income-generating activities such as poultry (Kigorobya), piggery (Kikuube), goat rearing (Masindi), and crafts & soap-making (Hoima City). These initiatives improve household income, strengthen group cohesion, and enhance the well-being of families.
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Training and Capacity Building

We support families and caregivers with income-generating activities such as poultry (Kigorobya), piggery (Kikuube), goat rearing (Masindi), and crafts & soap-making (Hoima City). These initiatives improve household income, strengthen group cohesion, and enhance the well-being of families.

Research and Education Program

We actively contribute to research and evidence generation. RDSAC is part of the Human Trisome Project (https://www.trisome.org/), in partnership with Makerere University College of Health Sciences and other international institutions. This work helps build the evidence base needed to influence national policy and improve services.
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Building a Centre of Excellence

We are developing a Centre of Excellence in Hoima City that will provide integrated services in therapy, training, research, and data management. This centre will serve as a national and regional model, demonstrating how individuals with Down syndrome can lead full, independent, and fulfilling lives.

In the Bunyoro sub-region alone, over 1,100 individuals are estimated to be living with Down syndrome, yet only 11% are currently reached by structured support programs.

Support Our Work
OVER 1100LIVE WITH DS

IN BUNYORO SUB-REGION ALONE

Current Projects

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Institutional Programs

At Rowan’s Down Syndrome Awareness Centre (RDSAC), our work is delivered through structured projects and programs designed to provide holistic support to individuals with Down syndrome and their families.
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Speech Therapy Program

We provide regular speech and communication therapy to support children with Down syndrome in developing language, social interaction, and cognitive skills. This includes monthly therapy sessions at our center and outreach support in partner health facilities.
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Livelihoods Program

We bring together families through four established support groups across Hoima, Masindi, Kikuube, and surrounding areas. These groups provide a safe space for sharing experiences, peer learning, and emotional support, helping families navigate the challenges of care.
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Research and Education Program

RDSAC contributes to research that improves understanding and care for Down syndrome through partnerships with academic and global institutions. We also offer education support through grants and guidance to help children access and remain in school.
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Calendar Events and Awareness Campaigns

We organize key events throughout the year to raise awareness and build community engagement. These include World Down Syndrome Day (March 21st), Down Syndrome Awareness Month (October), community outreach activities, and media campaigns.
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Rowan’s and Michael’s Success Stories

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Nearly 50% of children born with Down syndrome also have congenital heart defects: conditions that can greatly reduce their chances of survival if corrective surgery is not done within the first year of life. For many families in Uganda, accessing specialized heart care is extremely difficult due to high costs and limited services. At Rowan’s Down Syndrome Awareness Centre, we are committed to giving these children a fighting chance.Through referrals, family support, and strategic partnerships, we help children with congenital heart defects access life-saving surgeries and care.We work under a Memorandum of Understanding with the Heart Institute of Mulago National Referral Hospital and closely collaborate with the Indian Association of Uganda, which has generously supported surgeries and travel costs for children receiving treatment in India.

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At RDSAC, every heartbeat matters.

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Two of our inspiring success stories are Rowan Cripps and Michael Murungi, who both underwent successful heart surgeries in India at different times. Rowan’s surgery was made possible through the support of family and friends, while Michael’s surgery was fully funded by the Indian Association of Uganda. Their journeys continue to give hope to many families raising children with Down syndrome.

Today, three more children are lined up for surgery, and we continue to advocate for timely treatment and support so that every child has the opportunity to live a healthy and fulfilling life. At RDSAC, every heartbeat matters.

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Where We Work

RDSAC is headquartered in Hoima City, located in the Bunyoro sub-region of Western Uganda. From this hub, we serve families across multiple districts, including Hoima, Masindi, Buliisa, and Kikuube. Our services are delivered directly at our Hoima base and through regular outreach partnerships with health centres, schools, community groups, and district leadership platforms.

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    About Down Syndrome
    Down syndrome is a genetic condition that occurs when a person is born with an extra copy of chromosome 21. Because of this, it is sometimes called Trisomy 21. Currently, we have 133 members; every 1 in 1000 children are born with Down syndrome. 2024 Uganda National Population and Housing Census (UBOS), the populations of the districts you asked about are approximately the following:
    Hoima District: 257,544 ds 257
    Masindi District: 342,635 ds 342
    Buliisa District: 167,894 ds 167
    Kikuube District: 379,547 ds 379
    Total Population
    ≈ 1,147,620 people combined. Gives 1,147 people living with Down syndrome; so far we have 133 (11%)

    Some of the Common Signs of Down Syndrome Include:

    Some level of intellectual disability
    Delayed development
    Certain physical characteristics such as a flat facial profile or almond-shaped eyes, small hands, and a small head.

    However, it is important to remember that people with Down syndrome can learn, go to school, work, and participate in community life.

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    Get Involved: Here is How You Can Help

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    SPONSOR THERAPY SESSIONS
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    SUPPORT A CHILD’S MEDICAL CARE
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    FUND A FAMILY LIVELIHOOD PROJECT
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    Self-Help Groups

    Developing Support Groups
    We have successfully renewed the certificates of two caregivers’ support groups in Hoima City and Kigorobya and tirelessly working to register one for Masindi and Kikuube Districts.
    Through these efforts, RDSAC secured a 5 million UGX grant from the Government of Uganda for the Kigorobya District group, which has been invested in a poultry project that currently has 91 birds and a fully constructed poultry house.
    Similarly, the Masindi group received a 40 million UGX grant to launch a Goat-rearing project, now in its third quarter of implementation. As part of this initiative, 31 members from two sub-counties will each receive two female goats to support their livelihoods.
    Meanwhile, the Kikuube caregivers’ group is in its early stages of development.
    RDSAC remains committed to supporting individuals with Down syndrome, expanding awareness, and improving access to essential medical and social services.

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