Rare

It is estimated that there are 350 million people worldwide living with a rare disease. That is the only statistic I will share with you today. I have written many, many times about the statistics around having a rare disease. I have […]

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Awareness – help spread it!!!!

(Genetic &) Rare Diseases Day- February 28th. I have always said ‘alone we are rare but together we are a forced to be reckoned with’. So with this in mind, this year I am working with the Mesothelioma Cancer Care Alliance to […]

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