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Today the Amyloidosis Research Consortium (ARC), a patient-led research organization for amyloidosis diseases, announces the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact Reach and Equity, a collaborative of biotech and pharmaceutical companies committed to advancing solutions, improving diagnosis and systems of care, and addressing obstacles to health equity on behalf of amyloidosis patients.

Amyloidosis refers to a group of rare, progressive diseases in which abnormal proteins deposit as amyloid in tissues and organs, often in multiple systems within the body, resulting in impaired organ function and significant impacts to quality of life. Despite notable progress in recent years, amyloidosis patients continue to experience high unmet needs and gaps in treatment and support. ARC, as a patient-founded non-profit, has built credibility across the amyloidosis community as a leading convener of collaborative efforts that unite stakeholders to address the most pressing needs of patients, accelerate research progress, and expand systems of care for all. ARC established ASPIRE as a strategic initiative to drive forward evidence-based programs that help to shape the evolving amyloidosis landscape for the benefit of patients. “Amyloidosis diseases are devastating and life-threatening and when ARC was formed there were no approved therapies available,” said Isabelle Lousada, ARC’s Founder and CEO. “Both interest and investment in amyloidosis research and innovation has grown exponentially and with that we have an incredible opportunity to align and harmonize our collective efforts to bring the greatest benefit to all patients with amyloidosis.”

ASPIRE establishes a new way of operating, changing the practice of how stakeholders come together to drive innovation and accelerate progress.


“Patients with amyloidosis often experience various challenges to arrive at a proper diagnosis, and expediting the diagnostic journey is critical to the overall care and management of these patients,” said Sonal Bhatia, MD, Chief Medical Officer, Rare Disease, Pfizer. “Pfizer is proud to join ARC’s initiative as a Co-Chair of the ASPIRE Executive Steering Committee. We look forward to collaborating on the development of innovative solutions that aim to accelerate appropriate diagnosis and improve care and health outcomes for patients with amyloidosis.”

At launch, ASPIRE member companies include:

  • Alexion, AstraZeneca Rare Disease
  • Alnylam Pharmaceuticals
  • AstraZeneca
  • Attralus Therapeutics
  • BridgeBio Pharma
  • Ionis Pharmaceuticals
  • Janssen Pharmaceutical Companies of Johnson & Johnson
  • Novo Nordisk A/S
  • Pfizer Inc.
  • Prothena Corporation

Working synergistically within and across shared interests, with combined resources, and within a framework that supports reciprocal learning and partnership, ASPIRE is positioned to demonstrate what can be done when leaders work together to elevate community-led solutions on behalf of rare disease patients. “The level of commitment from the member companies in ASPIRE is remarkable and speaks to ARC’s strong leadership and track record of mobilizing stakeholders to collectively face challenges head-on,” Kristina Bowyer, Vice President of Patient Centric Drug Development at Ionis Pharmaceuticals and Co-Chair of ASPIRE’s Executive Steering Committee said. “Working together as a Collaborative, we are well-poised to break down drivers of health disparities and take steps to meaningfully close the gaps in unmet need within the amyloidosis community.”

To learn more about ASPIRE and our current initiatives please visit



About the Amyloidosis Research Consortium (ARC)

The Amyloidosis Research Consortium (ARC), founded in 2015, is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC’s mission is to harness the power of collaboration and innovation to advance science, and both improve and extend the lives of those with amyloidosis. ARC operates by building strategic collaborations that bring the ecosystem of stakeholders together to deliver value while partnering on programs that have the greatest impact for patients in both the near and long-term. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics, supporting and empowering patients, families, caregivers, physicians, and researchers.


Media Contact at ARC:

Johnny Rosa

(617) 467-5170


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SOURCE Amyloidosis Research Consortium (ARC)