Medical Research


aka ARC

Newton, MA


Accelerating the development of advanced diagnostic tools and effective treatments for systemic amyloidosis through collaboration and innovation.

Ruling Year


CEO and President

Ms. Isabelle Lousada

Main Address

320 Nevada St. Suite 210

Newton, MA 02460 USA


Amyloidosis Rare Disease Patient-Driven Research





Cause Area (NTEE Code)

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.

Sign in or create an account to view Form(s) 990 for 2016, 2016 and 2015.
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Social Media

Programs + Results

What we aim to solve New!

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

Our programs

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

SOURCE: Self-reported by organization

Awareness and Diagnosis

Research Programs

Advocacy Programs

Supporting Patients

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of participants attending course/session/workshop

Population(s) served

No target populations selected

Context notes

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

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

The Amyloidosis Research Consortium is committed to building collaborative relationships between patients, academia, industry, foundations, federal funders, and regulators to advance the best research and speed new therapies to market. The Amyloidosis Research Consortium is focused on increasing the amount of research and building a prioritized portfolio of 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 blue print 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.

All ARC's programs are evaluated for success against pre-defined metrics. Programs are frequently evaluated and adjustments made to ensure that scarce resources are being used wisely, and programs are having the maximum impact and reaching our annual goals.

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.

External Reviews



Fiscal year: Jan 01 - Dec 31

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2016 and 2015
A Pro report is also available for this organization for $125.
Click here to view a Sample Report.


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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2016 and 2015
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization


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?



Has the board conducted a formal, written assessment of the chief executive within the past year?



Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?



Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?



Has the board conducted a formal, written self-assessment of its performance within the past three years?