PLATINUM2023

AMYLOIDOSIS RESEARCH CONSORTIUM INC

aka ARC   |   Newton, MA   |  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

Ms. Isabelle Lousada

Main address

320 Nevada St. Suite 210

Newton, MA 02460 USA

Show more contact info

EIN

47-2589708

NTEE code info

Specifically Named Diseases Research (H80)

Alliance/Advocacy Organizations (H01)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

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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

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
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?

  • What challenges does the organization face when collecting feedback?

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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Connect with nonprofit leaders

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  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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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 09/07/2023
SOURCE: Self-reported by organization
Board chair

Ms. Sarah Cairns-Smith

Boston Consulting Group

Term: 2018 -

Raymond Comenzo

Tufts University School of Medicine, Boston, MA

Giampaolo Merlini

Scientific Institute Policlinico San Matteo, University of Pavia, Italy

Isabelle Lousada

Amyloidosis Research Consortium, Inc.

Dena Heath

Northern California Amyloidosis Support Group

Sarah Cairns-Smith

The Boston Consulting Group

Jason Shore

Patient Discovery Solution

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

SOURCE: Self-reported; last updated 7/20/2022

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

Leadership

No data

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/11/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.