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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.

Shannon Burkoth

Shannon is a passionate patient advocate and leader in the narcolepsy & rare disease communities. After her diagnosis of narcolepsy with cataplexy in 2010, this rare neurological disease turned her world upside down and left her disabled after failed treatment options. Shannon is also undiagnosed with a multi-system disorder and is on a current diagnostic odyssey with one of the top metabolic specialists in the US.  


With a background in business and healthcare management, Shannon had to grieve the person she once was. She has redefined herself from victim to survivor and became a fighter! Advocacy has empowered her to help make a difference in a world she never knew existed.


Shannon is a trained speaker and program mentor for Project-Sleep’s Rising Voices of Narcolepsy and a member of the Rare Advocacy Movement and the Narcolepsy Network. Shannon’s advocacy efforts include speaking at nursing schools and conferences, consulting on patient engagement & market research materials, facilitating family meetups, and has participated on grant review committees.


Shannon understands the urgent need to collaborate professionally and transparently within the rare disease space so that together we can all accomplish more. Let’s support one another, network and raise our voices together for a better future, 30 million strong is a powerful number!