Category: Advocacy

Earlier this month ARC announced the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact, Reach, & Equity. This initiative, independently facilitated and governed by ARC, brings together 10 different biotech & pharmaceutical companies committed to making a real impact in the lives of amyloidosis patients.

ARC is proud to work with the amyloidosis community to make treatments more accessible and improve and extend the lives of amyloidosis patients. ARC was founded to push research forward and extend and improve the lives of patients. We remain closely connected to patient needs and perspectives as we chart the course to a cure. That’s why Isabelle Lousada, CEO & President of ARC, and an amyloidosis patient herself, sees ASPIRE as an important piece of ARC’s work. “It is so heartening to see the commitment of companies to join forces to address the obstacles that stand in the way of amyloidosis patients receiving the care they need.”

“It is so heartening to see the commitment of companies to join forces to address the obstacles that stand in the way of amyloidosis patients receiving the care they need.”

– Isabelle Lousada, ARC Founder & CEO

The ASPIRE initiative demonstrates what can be done when leaders work together to elevate community-led solutions on behalf of amyloidosis patients. As we invest in partnerships through the ASPIRE collaborative, ARC is grateful to our member companies for supporting programs that are creating patient-centric change in amyloidosis treatment and research. The current 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.
• Prothena Corporation

ARC and the ASPIRE member companies are committed to incorporating diverse perspectives and experiences as we design and implement solutions. Each ASPIRE program includes partnerships and representation from across the amyloidosis community – patients, caregivers, patient organizations, academics, researchers, industry, and others. Our collaborative approach is central to identifying and addressing the unmet needs of the community and generating real impact for patients. Through this collaboration, ASPIRE is positioned to support community generated ideas that result in meaningful change for patients.

As we celebrate our community on World Amyloidosis Day, we proudly share our dedication to working together to prioritize impact and actions in the following three areas:

Strengthening Capacity and Establishing a Framework for Regional Care Networks

As is often the case for rare diseases, there are a limited number of disease specialists and few academic medical centers with expertise in researching, diagnosing, and treating amyloidosis. By creating systems of coordinated care to expand knowledge-sharing and extend networks of support, we aim to elevate the care received by patients, reduce barriers to seeking healthcare, and strengthen additional aspects of health and social well-being.

Understanding Drivers of Health Disparities and Moving Toward Greater Health Equity

Regional, ethnic, racial, and socioeconomic disparities in amyloidosis diagnosis, treatment, and outcomes have been documented. By aligning the amyloidosis stakeholder ecosystem around disease and demographic characterization of amyloidosis conditions, and evaluating the effects of structural racism and the socio-political determinants of health, our work aims to better understand the human consequences of differential treatment and identify opportunities to apply practical, effective, systematic solutions that move the amyloidosis community toward greater health equity.

Channeling AI to Improve Timely, Accurate, & Equitable Diagnosis

Improving the screening and identification of patients at risk of amyloidosis who should receive further evaluation for diagnosis and care may lead to better patient outcomes and improved quality of life. We aim to achieve broad use of a community-driven AI-based solution, evaluated with input from cross-sector experts and individuals with lived experience, to improve diagnostic pathways and disease management for amyloidosis patients.

By combining patient perspectives with the power and possibilities of a multi-disciplinary industry collaborative, ASPIRE is positioned to bring together a variety of expertise to accelerate meaningful progress for patient needs that have remained unmet for too long.

We are #StrongerTogether!