Our Mission

At the Rare Living Foundation, our mission is to provide hope, resources, and advocacy for individuals and families affected by rare diseases, ensuring they feel seen, supported, and empowered while upholding the belief that every life has inherent value and deserves compassionate care. We are dedicated to illuminating the unique challenges faced by those living with rare diseases, raising awareness, advancing research, and fostering community partnerships that will empower patients and their families through education and support, and bridging the gap between medical providers and the resources needed for effective care.

 Together, we strive to build a world where every rare story is seen, heard, and valued. 

Our Vision

We envision a world where individuals with rare diseases are fully understood, valued, and supported, with equitable access to treatments, resources, and opportunities. By championing the inherent worth of every life, we aim to create a future where no one faces the challenges of a rare disease alone. This future includes:

  • Holistic Support: Accessible, patient-centered care and comprehensive resources that address the physical, emotional, and social needs of individuals and their families.

  • Breakthrough Innovation: A thriving ecosystem of research and collaboration that accelerates the discovery of treatments and cures for rare diseases.

  • Empowered Communities: Informed and engaged patients, caregivers, and advocates working together to shape policies and foster inclusivity.

  • Global Awareness: A society that recognizes and respects the unique challenges faced by those with rare diseases, ensuring their voices are heard and their contributions celebrated.

Together, we strive to build a compassionate and inclusive world where every life is honored, and no rare disease is left without a solution.

Meet Our Team

  • Giusiana Prosser

    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.

  • Alexus Wiebe

    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.

  • Thomas Lefebvre

    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.

  • Dustin Wood

    BOARD MEMBER

    Dustin was born and raised in South Charleston, West Virginia. He has Classical Ehlers-Danlos Syndrome (cEDS), which he shares in common with both parents and Grandmother.

    He has aspirations to establish protocols within the medical system so if you have one comorbidity, you are immediately screened for the rest.

    Missed diagnoses will be a thing of the past. Dustin is excited to work with the Rare Living Foundation, show how rare patients live, and provide resources for those who need it.