Standing Up for the Unseen — Creating Connection in the Rare Disease Community

At Rare Diseases South Africa (RDSA), our work is rooted in a simple belief: every person deserves a diagnosis, a community and a chance at a full and supported life.

Our journey into the rare disease space didn’t begin with strategy. It began with lived experience. RDSA was founded because someone in our community couldn’t find the answers, support, or recognition they needed. That gap, that feeling of being unseen, became the catalyst for an organisation determined to ensure no one else walks that path alone.

Over the years, our work has grown from holding space for individuals and families to building a national movement advocating for access, equity, and dignity. We support patients navigating complex healthcare systems, empower communities through education and collaborate with partners to bring meaningful change to policy, research, and early identification.

But at its heart, this work remains deeply human. It’s in the parent searching for a diagnosis. It’s in the patient sharing their story for the first time. It’s in the teacher learning how to support a child in their class. It’s in the moment someone realises they are part of something bigger than their condition.

Why does this work matter?
Because rare shouldn’t mean alone.

Every person living with a rare condition deserves to be recognised, understood, and supported, and that belief continues to guide everything we do.