Category: Advocacy

Rare disease day is on February 28th. The entire week provides a unique opportunity to raise awareness of key policy issues that affect amyloidosis. Patient organizations, NIH and other government entities, medical researchers, and pharmaceutical companies developing treatments for rare...

The Amyloidosis Research Consortium (ARC) submitted a draft guidance for industry on developing drugs for AL amyloidosis to the Food and Drug Administration (FDA), to improve the design of clinical trials and accelerate the review of potential therapies. Patients with...

Dale Schenk was born May 10, 1957 in Glendora, California to Walter Bernard Schenk, a firefighter, and Rosemary Schenk, a family therapist. He received an undergraduate degree in biology in 1979 from the University of California at San Diego, where...

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...

Much has been said about the need to put patients at the center of drug development. The Amyloidosis Research Consortium (ARC), is doing just that. The FDA's Patient-Focused Drug Development initiative is a commitment under the fifth authorization of the...