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Review for Amyloidosis Research Consortium Inc, Newton, MA, USA

Rating: 5 stars  

I am what non-profits might call a “super volunteer” and am currently a member of the ARC Board of Directors. I have been “working” in amyloidosis since 2004 after my husband’s diagnosis of amyloidosis, facilitating a support group and working awareness booths at medical conventions. I started volunteering for the Amyloidosis Research Consortium when it was still just an idea and not even incorporated yet. The commitments of ARC’s leader, Isabelle Lousada, and the other volunteers and now employees, have been extraordinary in the rare disease world. This team gets things done! They break down rare disease barriers, enlist and engage critical experts and key opinion leaders, and deliver on projects, publications, and the global awareness of this life-threatening disease.
From the launch of the Industry Advisory Council and the Patient Driven Drug Development meetings with the FDA to the upcoming ARC Masterclass: The Art and Science of Managing Amyloidosis, every task, every project, every accomplishment, has been focused on improving the lives of amyloidosis patients.

Role:  Board Member