FOUNDER & PRESIDENT

Giusiana is the Founder, President, and CEO of Rare Living. Diagnosed with multiple rare conditions, including Andersen-Tawil syndrome, she founded the Rare Living Foundation to provide the resources, community, and advocacy she wished had been available during her own journey. A passionate advocate and leader, Giusiana is committed to making the path to diagnosis and care less isolating and more accessible for others in the rare disease community.

VICE PRESIDENT & COMMUNICATIONS AND RESEARCH DIRECTOR

A proud born & raised Canadian, Alexus serves as our Vice-President and Research & Communications Director.

Diagnosed with hypermobile Ehlers-Danlos syndrome, many comorbidities, and suspected Andersen-Tawil Syndrome, she desires to help make others’ journey to diagnosis less confusing, overwhelming, and lonely than hers.

SECRETARY & MARKETING DIRECTOR

Born & raised in Canada, Thomas serves as Secretary and is our Marketing Director. Many of Thomas’s Friends live with rare diseases, and he seeks to use his skills and expertise in his work with the Rare Living Foundation to help others with the same.

BOARD MEMBER

Born and raised in the Midwest, United States, Isaac is proud to serve as a member of the board. Many people in Isaac’s life deal with many different rare diseases and he strives to help others who are in their position.

Isaac is a proud Nebraska Cornhuskers fan and is excited to be going back to school to pursue a degree in education