sean gordon
Sean is a patient with Adult polyglucosan body disease (APBD). APBD is a late-onset, slowly progressive disorder affecting the central and peripheral nervous systems, presenting from the mid 40’s onward.APBD causes decreased walking ability and other symptoms, ultimately causing Sean to leave his career and focus his energies on general rare disease advocacy efforts, as well as APBD advocacy efforts in Israel, where he currently resides.
After a close brush with death from a pulmonary embolism, Sean partnered with a group of other patients in Israel and founded Israel Adult Polyglucosan Body Disease, a patient advocacy organization for APBD. Additionally, Sean is a graduate of the EURORDIS summer program. Before Sean was diagnosed and his health began to fail, he was a founder and an executive at a variety of international high technology companies. Before he went on long-term disability, he was CEO of a Big Data company which he sold to a NASDAQ company.
Sean is now channeling his tech and entrepreneurial skills in the creation of philanthropic ventures targeted to serving the rare disease community. The most recent is rare360 creates “Comprehensive Rare Disease Advocates” trained to work with Digital Health Platforms. “These new AI driven platforms hold the promise of developing pathbreaking treatments for a variety of rare indications. However, without trusting and trained advocates the data will not reach the platforms – rare360 looks connect patients.”The first venture is Rare Funding Team, matches rare disease organizations with digital marketing professionals.
Sean observed that many patient organizations are fueled by passion and emotional energy but often lack financial and professional resources. Rare Funding Team provides a platform where critical partnerships can be made in areas of marketing communications, graphics, IT, management and law.
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The Rare Advocacy Movement (RAM) is a rare disease community-based advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based Center of Insight and Collaboration for rare disease focused stakeholders seeking authentic collaborations and comprehensive community insights. Each current RAM member has made a public vow to always act in the best interests of the rare disease community through the adopted Code of Conduct for Membership or risk being removed from the RAM membership and network.