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.

In 2016, we supported the establishment of Rwanda Down Syndrome Organisation (RDSO). By November 2018 they were already supporting 400 families.

Since then, RDSO have registered 93 new families with children with Down syndrome. All of these were families that had previously had no support and had very little understanding of what Down syndrome was or how it might 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.

Supporting families

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 that RDSO works with;
• Providing information on health issues for children with Down syndrome, including related medical conditions;
• 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 by parents and it has been agreed that RDSO will run a similar workshop quarterly.

Raising awareness

In March 2019, RDSO worked with Green Hills Academy, 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 and one of the students at the school with Down syndrome spoke to students and parents about Down syndrome. The school also held an event for World Down Syndrome Day on 21 March.

RDSO also has been raising awareness about Down syndrome through appearances on KT Radio and a newspaper article published in Kigali Today.

Sustainability

Over the past year RDSO has taken significant steps to increase its financial sustainability. This has included finding a free office space, reducing salary costs by recruiting volunteers, finding a local sponsor to cover the annual World Down Syndrome Day event, and building partnerships with potential partners, organisations and donors.

DSi will keep fundraising for money to support RDSO’s core running costs while supporting them to further reduce their reliance on this support. We are confident that with continued support in the short term they will reach the stage where they can generate their own funds and run without our support.

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Read more about this project here:

RWANDA NEW ORGANISATION

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GLOBAL SUPPORT CAMPAIGN