2015-May 2019 AKCEA THERAPEUTICS Boston, Mass.Executive Director of Patient Advocacy and PolicyEstablished and now lead the relationship with the global Familial Chylomicronemia Syndrome patientcommunity, an ultra-rare and progressive disease with no commercially approved therapies, and withno previously established global patient advocacy network. Responsible for developing and maintainingAkcea’s relationship with medical societies.• Architect for the global FCS patient community: bringing FCS patients together, helping them tounderstand their collective power and supporting them as they formed the FCS Foundation in theUS. Worked to establish a network for patient support organization across EU.• Supported the development of the FCS patient leaders through partnerships with Global Genes,NORD, CORD, Genetic Alliance UK, HEART UK, and EURORDIS.• Responsible for working cross functionally to ensure that the needs of FCS patients were wellunderstood internally and serving those needs became everyone’s mission.• Worked to ensure that the FCS patient voice was represented at meetings with the FDA, NICE andCHMP.• Responsible for managing Akcea’s relationship with medical societies.

Architect of rare disease patient communities:Supported the development of FH/HoFH related patient organizations in the US and around the world. Was instumental in bringing together, introducing, casting vision, and supporting the group of patients that would independently form The FH Foundation in the US.

Global Patient Advocacy - Rare Disease (Thyroid Cancer, Niemann-Pick Disease, Familiar Hypercholesterolemia)

Managed a district of 10 representatives