Abstract
We're living in turbulent times. Accelerating climate change, threats of future pandemics, the ever growing dangers of anti-microbial resistance and global political instability are all contributing to what may be perceived as a rare confluence of challenges facing the human population. Rare disease patients are accustomed to the notion of uncertainty but yet they put their faith that one day science may prevail and a curative treatment may be realised. So many patients simply dream of a diagnosis. A diagnosis is often the first flickering of light, piercing through the darkness, finally releasing oneself from the odyssey into a path towards hope. It is also the opportunity to be that beacon of light, reaching others that are swimming against the tide. This supplement's perspectives speak ostensibly to the ethical ramifications surrounding rare disease and our duties to see things through the ‘lens of equity'. How we choose our words in dealing with rare patients is critically important too. What do we really mean when we utter platitudes of putting the patient front and centre or opining on the need for transparency, collaboration and engagement? We have to walk in a rare patient's shoes if we are to truly understand how to develop transformative diagnostics and therapeutics in an effective and equitable manner. If we're all aligned, it is within our grasp, of this I am certain.
Damian Doherty, Editor at Large
