Sandy Bevc ANZBMS-MEPSA-ANZORS 2022

Sandy Bevc

Sandy is from Melbourne, Australia, and has a rare disease connection being born with spontaneous X-linked Hypophosphatemia (XLH). Having a child born with XLH her passion for advocacy and access to medical care in the XLH community began. Sandy is one of the co-founders of XLH Australia and has had the privilege of being part of many advocacy initiatives. The patient voice is instrumental to create further awareness and education about this rare condition, whilst working hand in hand with XLH specialists. In 2019 XLH Australia became part of a wider XLH network, joining 23 countries which form the International XLH Alliance. The last 2 years XLH Australia’s focus has been on access of a new treatment for the whole XLH population, as well as creating further awareness of XLH in the community. Sandy is also in her final year of a Bachelor of Social Science, majoring in Criminology, and hopes to join the Justice System. Sandy is committed to making a difference in the lives of the rare disease XLH community and in June 2022 Sandy will become President of XLH Asia/Pacific which represents a wider XLH population.