We have been working in Rwanda for the last 3 years, supporting the development of Rwanda Down Syndrome Organisation (RDSO - the first Down syndrome specific organisation of persons with disabilities in Rwanda).

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The challenge

In Rwanda people with Down syndrome and their families are often isolated and lack important information about key issues affecting their lives. They struggle to participate in society due to negative attitudes and have limited access to basic healthcare and education.

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How we are helping

In 2016, we supported the establishment of RDSO. By November 2018 they were already supporting 400 families.

Since then up to the end of 2019, RDSO registered 93 further families with children with Down syndrome. All of these families previously had no support and very little understanding of what Down syndrome was or how it could affect their child. Some families were referred to RDSO by medical professionals and others heard of the organisation through media appearances or word of mouth.

RDSO has spent a lot of time meeting individually with families providing support and advice, which can include:

• checking if families have done the karyotype (genetic) test for Down syndrome;
• talking about physiotherapy and occupational therapy;
• putting families in contact with doctors and therapists RDSO works with;
• providing information on health issues for children with Down syndrome, including related medical conditions and
• discussing school options in Rwanda.

In May 2019, RDSO organised a training workshop attended by 51 parents of children with Down syndrome. The workshop provided key information about Down syndrome and the situation for people with Down syndrome in Rwanda. It also featured an occupational therapist who provided advice and answered questions about caring for children with Down syndrome from a young age.

The workshop was very well received and a follow up workshop took place in November 2019, when 30 parents met with a psychologist to discuss parent and sibling perspectives and peer support.

Also in 2019, RDSO worked with one of the few schools in Rwanda offering inclusive education for children with Down syndrome, to arrange an awareness campaign about Down syndrome and autism. RDSO has also been raising awareness through Kigali based media outlets.

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Long term impact

By supporting families and people with Down syndrome and advocating for access to key services including education and healthcare, this project will have an enormous positive impact on the lives of people with Down syndrome in Rwanda. Having these rights fulfilled will open up a huge range of opportunities in the long-term, enabling people with Down syndrome to be included in their communities and live healthy, fulfilled lives.

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Visit our Global Giving project page to learn more or to donate to support this project: 

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Our work

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