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. Sean is now channeling his tech skills in the creation of philanthropic ventures targeted to serving the rare disease community. One of these ventures, called 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. Sean is open and ready to collaborate with others for the advancement of the rare disease community and plans on releasing his second venture before the end of 2018.
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The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.