A new group of biotech and pharma companies has been assembled by the Amyloidosis Research Consortium (ARC).
ASPIRE (amyloidosis stakeholder partnerships for impact reach and equity), is a collaboration between 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.
The Amyloidosis Research Consortium, a patient-founded non-profit, 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, the Amyloidosis Research Consortium’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, 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.”
ASPIRE member companies
At launch, ASPIRE member companies are: 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.; and Prothena Corporation.
“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.”