Amyloidosis Voice at Global Genes Summit

On September 22nd and 23rd two members of the Amyloidosis Research Consortium were invited speakers at the Global Genes 5th Annual RARE Patient Advocacy Summit event in Huntington Beach, California. ARC CEO Isabelle Lousada delivered a presentation on The Patient’s Role in Drug Discovery: Pre-Clinical Tools and described the work that is accomplished through ARC’s collaborative network of leading experts to identify and validate biomarkers. This work is vital to improving and accelerating drug development in amyloidosis.

ARC Board of Directors member, Dena Heath, addressed Regulatory Advocacy: Patient Organization Case Studies on Working with the FDA. Dena presented the impressive portfolio of work that has been done through the ARC to engage the FDA and raise their understanding of amyloidosis, in order to create a better environment for evaluating novel treatments for these diseases.

It was an honor to be asked to speak at this outstanding RARE Patient Advocacy Summit and to be among an extraordinary group of rare disease patients and advocates, scientists, medical experts, regulatory experts, and the passionate and determined individuals and teams from rare disease organizations around the USA.

About Global Genes

Global Genes is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations. Learn more at:

The Amyloidosis Research Consortium is a member of the Global Genes RARE Foundation Alliance, which is a coalition of over 300 rare disease organizations that understand that together we are more powerful. The alliance partners exchange best practices and share their lessons learned in order to drive better outcomes for the entire rare disease community, and creates a culture of collaboration to maximize  “The Power of the Collective Impact.” 

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