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RARE Lysosomal

In this edition, we aim to take you from the origins of medical discovery and first description of RARE lysosomal disorders; through to the ground-breaking scientific breakthroughs; and the drive for regulatory and policy change. All forged by an army of passionate advocates, who are propelled to help in the quest to alter the path for families facing a diagnosis today—and in the future.

In a world where ‘make memories’ is a key mainstay of clinical advice the stakes cannot be higher. This unbearable weight is a toll few on the outside can ever truly understand. There is therefore, something else that sits at the centre of all this—love.

Love in its many forms. A father’s love—promises made, and unimaginable final acts of love. A mother’s love— being the glue, surviving ‘life after’, and everything inbetween. Lovers, love—couples torn apart and trying to find their way back to each other. So, with spring in the air, this edition, supported by Azafaros, is dedicated simply to those who love—love at any cost—love that sees this community continue to give, even when their love is lost. All for the benefit of others and the greater good for families of the future, families they may never know. And to the pioneers who dedicate their careers to keeping love, and hope alive in all its forms. Read here: https://bit.ly/RARE-lysosomal

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