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Earlier this month, ARC CEO, Isabelle Lousada was among a small group of honorees named 2018 RARE Champion of Hope award recipients by Global Genes. This award, which recognizes individuals for their extraordinary achievements in the field of rare diseases, was established by Global Genes, a leading patient advocacy organization for rare and genetic disorders.

Advocacy is critical in ensuring that people, particularly those who are most vulnerable in society, can have their voices heard on issues that are important to them.

Since being diagnosed with AL amyloidosis over twenty years ago – and successfully undergoing a stem cell transplant – Lousada has committed herself to empowering other patients, supporting their critical and unmet needs, and pursuing research that will change the course of the disease.

As the founder and driving force behind the Amyloidosis Research Consortium (ARC), Lousada builds successful collaborations and programs across all sectors to advance the science and understanding of amyloidosis; to accelerate the development of and access to new and innovative treatments for systemic amyloidosis; and to improve the quality of life for patients.

Lousada holds several leadership positions on various boards and committees. She is also a regular key note speaker at national and international conferences, raising awareness for amyloidosis and especially calling for earlier diagnosis.

“I am honored to be amongst such an amazing group of honorees.” Says Lousada. “But there is still a long way to go. We believe we can get there by driving the research that will have the greatest impact on length and quality of life for patients. We are doing everything in our power to increase access to quality care and critical information that can support their unique journey, from diagnosis to treatment.”

ARC is a registered 501(c)3 organization dedicated to serving the unmet needs of patients and families living with amyloidosis.

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