Organizing and managing your Facebook and Social MediaMaria Dastur
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Executive Director of the Rocky Mountain Chapter of the Scleroderma Foundation.
Maria’s work in the rare disease field began with the Ben’s Friends (BF) AVM Patient Community. Initially serving as a group mod, she quickly graduated to the new BF’s Facebook development team. In this role, Maria worked to create 50 new rare disease Facebook pages. Maria served as the DC/MD/VA Regional Mast Cell Disease Support Group leader for 4 years. During this time, she grew her support group and Facebook group grew to over 400 members. As a support group leader in DC, she felt that it was important that the group become active with advocacy efforts on Capitol Hill. Group members represented mast cell disease patients at Rare Disease Week on Capitol Hill events for the past three years. Recognizing the comorbid nature of mast cell disease, Maria began to forge relationships with EDS Wellness, the DC EDS Support Group and the Dyautonomia Support Network. Maria currently serves at the Executive Director of the Rocky Mountain Chapter of the Scleroderma Foundation.