Good health is something we all wish for, and often take for granted. When our child is born, we hope for a healthy baby with the requisite number of fingers and toes. As we get older, we expect that medical advances will keep pace with our needs, and, if the worst was to befall, our healthcare system, with its plethora of research, medical interventions, drugs, and, above all, options, will soften the blow. But for those diagnosed with a rare disease, that is not always the case. Research into orphan conditions is often poorly funded, options are limited, and treatments usually incredibly expensive, and, on the grounds of costs and minimum need, often rejected by regulators and Governments. With that in mind, imagine being a SWAN: someone whose condition is so rare that all the science in the world can't pinpoint it—a syndrome without a name.

But there is hope. Today, all four home nations came together, in the week that we mark Rare Disease Day, to discuss the progress made by individual nations on implementing the UK rare diseases framework. In Wales, there have been some extraordinary improvements, but, nonetheless, access to treatments and support for the rare disease community is basically left to a handful of passionate and dedicated clinicians and the tireless efforts of campaigners and organisations such as Genetic Alliance UK, Rare Disease UK and SWAN UK. But we do have the opportunity, and the groundwork is in place. So, I ask that the next Welsh Government take up this baton and make it happen. Whoever you are, you have the ability to ease if not transform lives—please, take the challenge.