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Lysosomal Storage Disorders Support Society

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LSDSS participates in Pinnacle Conference in Singapore

LSDSS joined rare-disease patient organisations from across Asia Pacific at Pinnacle Singapore, organised by APARDO.

25–27 May 2022

Singapore

pinnacle singapore

On May 25-27, 2022, the LSDSS participated in Pinnacle Singapore, a conference of rare-disease patient organizations across the Asia Pacific (APAC), organized by the Asia Pacific Alliance for Rare Disease Organisations (APARDO).

The conference, an initiative of Rare Cancers Australia (RCA), involved two-and-a-half days of engaging and interactive workshops, learning about the latest developments and best practices in Data and Evidence Generation and Analysis, Genomics and New Technologies, Fundraising and Events Management, Universal Health Coverage, Writing Grant/Sponsorship Requests, and Patient Support.

The conference was a wonderful opportunity to network with industry members in person, share experiences and learn new ways to take the organization to the next level.

Award

12–14 September 2022

LSDSS was chosen from more than 40 nominated patient organisations worldwide for Global Genes’ “Champions of Hope” award.

Meeting

7–8 May 2022

The International Gaucher Alliance, of which LSDSS is a member, held its Biennial Members Meeting in Rotterdam.

Blog

26 February 2023

Why marriages between blood relatives raise the risk of genetic disorders such as LSDs, and how awareness and counselling can help.

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