PLATINUM2025

AMYLOIDOSIS RESEARCH CONSORTIUM INC

aka ARC   |   Newton, MA   |  http://www.arci.org

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Mission

The Amyloidosis Research Consortium (ARC) is a patient-focused nonprofit, harnessing the power of collaboration and innovation to advance science and both improve and extend the lives of those with amyloidosis.

Ruling year info

2015

CEO and President

Isabelle Lousada

Main address

320 Nevada St Ste 210

Newton, MA 02460-1435 USA

Show more contact info

EIN

47-2589708

NTEE code info

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Amyloidosis Research Consortium aims to address the urgent, unmet medical needs in amyloidosis.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Awareness and Diagnosis

We collaborate with amyloidosis experts from around the world to design educational tools that provide clinicians with easy access to the most current information on scientific and clinical advances to help achieve earlier diagnosis and therapeutic intervention.

Population(s) Served

The Amyloidosis Research Consortium has an end-to-end research model focused on accelerating the development of and access to new, effective treatments. Our major research initiatives and programs are designed to navigate and eradicate the hurdles standing in the way of progress, attract more investment and expand the amount of data available to drive progress. The Amyloidosis Research Consortium has formed a Public Private Partnership with the US Food and Drug Administration (FDA) to accelerate drug development in all types of systemic amyloidosis.

Population(s) Served

We partner closely with regulators to ensure they have a thorough understanding of amyloidosis and to improve the design of registration clinical trials. We also work with regulators to ensure their decisions about whether a new treatment should be approved, based on an assessment of both its benefits and risks, take into consideration the views of amyloidosis patients and their families. ARC works closely with groups like the Institute of Clinical and Economic Review (ICER) providing detailed reports to educate payers to help them understand amyloidosis and the value of new treatments to patients and their families.

Population(s) Served

Learning to navigate an amyloidosis diagnosis can be overwhelming. ARC provides the support, resources and empowerment for patients and caregivers to be knowledgeable in their disease and seek access to the best individualized treatment and care possible. Gaining a better understanding of the disease, its treatment options, symptoms and complications can help you and your support network make informed decisions about your treatment and care.

Population(s) Served

Where we work

  • Europe

  • United States

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Related Program

Awareness and Diagnosis

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of physicians attending scientific symposia, workshops or online CME courses and webinars

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Related Program

Supporting Patients

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers.


The Amyloidosis Research Consortium is focused on increasing the amount of research and building a prioritized portfolio across the entire drug development continuum, including basic, translational, clinical as well as health services research.

ARC has brought together experts across all stakeholder groups including researchers, clinicians, industry, regulators and payers to identify the most pressing priorities in research, from which a blueprint for the field has been developed, with a focus on areas that ARC can lead, support, or drive partnerships to deliver. We recognize that there are scarce resources in rare diseases like amyloidosis and there is a pressing need for strategic investment to maximize the impact of investment.

ARC has both a strong in house team as well as leveraging cross stakeholder collaborations to deliver on our substantial portfolio.

ARC has been recognized as a leading rare disease organization. ARC was the first organization to hold an externally led Patient Focused Drug Development Meeting with FDA. ARC has a global research network including the 25 leading amyloidosis centers. ARC has developed and is executing on a comprehensive research plan to break down the barriers that are slowing down drug development.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

Financials

AMYLOIDOSIS RESEARCH CONSORTIUM INC
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

AMYLOIDOSIS RESEARCH CONSORTIUM INC

Board of directors
as of 3/12/2025
SOURCE: Self-reported by organization
Board chair

Sarah Cairns-Smith

Boston Consulting Group

Term: 2018 -

Dena Heath BOARD MEMBER

Ashutosh Wechalekar BOARD MEMBER

Halley Faust

Isabelle Lousada CEO and President

Jason Shore

Patient Discovery Solution

Kena Thompson

Lauren Strickland

Valor Oncology

Mark Guidinger

Pines Investments, LLC

Raymond Comenzo

Tufts University School of Medicine, Boston, MA

Sarah Cairns-Smith

Boston Consulting Group

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? yes

Organizational demographics

info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability