Madelyn Schloss, Social Media and Development Associate for Gaucher Community Alliance, discusses the organization.
The Gaucher Community Alliance is a non-profit organization run by patients with Gaucher disease, offering advocacy, education, patient support, and networking opportunities. Ms. Schloss also explains why social media is so important for the rare disease community, noting making connections, raising awareness, and advocating as its main functions.
For more information, visit https://www.gauchercommunity.org/
For more information on the GRIDS Symposium, click here.
To learn more about rare lysosomal storage diseases, visit https://checkrare.com/diseases/lysosomal-storage-disorders/
