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  5. Sandra’s Journey in ASMD...

Sandra’s Journey in ASMD (Adult Patient)

January 5, 2018[email protected]
https://www.youtube.com/watch?v=Dj23FOI_hr8&list=PLmqBxf22n4lOwf-cR3LXbqYcBumYyyxJz&index=2

Sandra, an adult patient diagnosed with Acid Sphingomyelinase Deficiency (ASMD) describes her long journey of discovering her diagnosis of ASMD. She highlights the need of developing physician-patient partnership to work together and to increase disease awareness in the society.

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CheckOrphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases. CheckOrphan offers users an interactive and dynamic platform for all these diseases. This strategy allows visitors to be updated daily on all the latest news and interact with people internationally. This is essential, because due to the nature of these diseases, there is not a large concentration of individuals within any given proximity.
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