Amyloidosis Research Consortium

What Amyloidosis Research Consortium does

Amyloidosis Research Consortium (ARC), founded in 2015 and headquartered in Newton, Massachusetts, is a 501(c)(3) nonprofit that operates an end-to-end model combining patient support, provider education, clinical research, regulatory engagement, and industry collaboration for the amyloidosis disease community. Its core products include the My Amyloidosis Pathfinder (MAP) online treatment-center and clinical-trial matching tool (used by 6,500+ patients in the past year), the ATTR-QOL patient-reported outcome questionnaire co-developed with IQVIA, the PEER Link mentorship program, monthly ARC TALKS webinars, the Amyloidosis Project ECHO provider education program, a Clinical Fellowship Award Program funding up to 10 physicians annually, the FDA-partnered Amyloidosis Forum public-private partnership (formed 2019), and the ASPIRE industry collaborative (launched 2021) which convenes nine pharmaceutical companies including Alnylam, AstraZeneca, BridgeBio, Pfizer, Ionis, Attralus, Intellia, Janssen, and Novo Nordisk.

ARC generates revenue through individual donations, foundation grants, and industry sponsorships; all patient and caregiver services are provided free of charge. Distribution is fully digital and global — website, downloadable English/Spanish booklets, email newsletter, Facebook communities, a social-worker-staffed helpline, plus in-person annual convenings — and serves amyloidosis patients (AL, hereditary ATTR, wild-type ATTR, and rarer subtypes), caregivers, healthcare providers, and pharmaceutical sponsors across at least 12 countries with a survey footprint reaching 48 countries. The organization is governed by a board including senior leadership from Boston Consulting Group, Tufts, UCL, and University of Pavia, and has earned Charity Navigator Four-Star and Guidestar Platinum Transparency recognition.

Name

Amyloidosis Research Consortium

Legal name

Amyloidosis Research Consortium, Inc.

Website

https://arci.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

Amyloidosis Research Consortium is a 501(c)(3) nonprofit that accelerates amyloidosis research and patient support through digital tools, provider education, an FDA public-private partnership, and a multi-pharma industry collaborative serving patients, caregivers, and clinicians globally.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Patient Recruitment, Site Feasibility & Trial Enablement CROs (HLAGAAAI)

Keywords

• Amyloidosis research
• Rare disease advocacy
• Patient-reported outcomes
• Clinical fellowship training
• Medical education

Headquarters

HQ city

Newton

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure

Revenue model

1. Donations and Charitable Contributions: ARC operates as a 501(c)(3) nonprofit organization funded primarily through donations from individuals, foundations, and corporate partners. Donors can give online, by mail, through stock gifts, Donor Advised Funds, IRA Qualified Charitable Distributions, workplace giving, and recurring monthly gifts.
2. Industry Partnerships and Grants: ASPIRE industry collaborative brings together pharmaceutical companies including Alnylam, AstraZeneca, Attralus, BridgeBio, Intellia, Ionis, Janssen, Novo Nordisk, and Pfizer to fund research initiatives and programs. The Clinical Fellowship Program is supported by an independent educational grant from AstraZeneca and Ionis Pharmaceuticals.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels9 records

Core offering

ARC delivers a portfolio of free services for the amyloidosis community, including an online patient-treatment center matching tool (My Amyloidosis Pathfinder), peer mentorship (PEER Link), validated patient-reported outcome instruments (ATTR-QOL), provider education (Project ECHO, Clinical Fellowship Program), an FDA public-private partnership (The Amyloidosis Forum), and a pharmaceutical industry collaborative (ASPIRE).

Product overview

The Amyloidosis Research Consortium (ARC) operates as a nonprofit patient advocacy organization offering a portfolio of patient-centered tools, educational programs, and research initiatives. The core offerings include My Amyloidosis Pathfinder (MAP) for matching patients to treatment centers and clinical trials; ARC TALKS Webinars for monthly educational content; PEER Link for peer mentorship; the ATTR-QOL validated patient-reported outcome questionnaire; Project ECHO for medical provider education; a Clinical Fellowship Program training the next generation of amyloidosis specialists; The Amyloidosis Forum (FDA partnership); ASPIRE industry collaborative; and community research programs. These products and services work together to accelerate diagnosis, advance research, improve treatment access, and support patients and caregivers throughout their amyloidosis journey.

Differentiator

Problem solved

Functional benefit

Brands

• My Amyloidosis Pathfinder (MAP): An online tool that helps patients discover, learn about, and contact treatment centers and clinical trials specific to their amyloidosis type and condition.
• PEER Link
• Amyloidosis Project ECHO
• ARC TALKS
• ATTR-QOL

Products and services

• My Amyloidosis Pathfinder (MAP) An online self-service matching platform that helps amyloidosis patients discover, learn about, and contact treatment centers and clinical trials specific to their amyloidosis type. Used by more than 6,500 patients in the past year.
• PEER Link Mentorship Program A one-to-one peer support program connecting newly diagnosed amyloidosis patients and caregivers with trained volunteer mentors living with amyloidosis for emotional support and practical guidance.
• ARC TALKS Monthly Webinar Series A monthly webinar series providing patients and caregivers with educational content on living with amyloidosis, including clinical trial updates, symptom management, treatment information, and disease navigation.
• ATTR-QOL Patient-Reported Outcome Questionnaire The first validated disease-specific patient-reported outcome (PRO) measure for ATTR amyloidosis, developed in collaboration with IQVIA with more than 200 patients and disease experts, covering all ATTR subtypes with five symptom scales and four impact scales. Licensed for clinical and research use.
• Amyloidosis Project ECHO A virtual collaborative learning program offering quarterly one-hour interactive sessions for healthcare providers on AL and TTR amyloidosis, using didactic lectures and case-based learning to extend specialist expertise to non-specialist providers.
• Clinical Fellowship Award Program A one-year fellowship program funding up to 10 early-career physicians annually at leading amyloidosis centers in the U.S. and Canada, focused on clinical care, multi-disciplinary collaboration, research participation, and health equity. Supported by educational grants from AstraZeneca and Ionis Pharmaceuticals.
• The Amyloidosis Forum A public-private partnership between ARC and the U.S. FDA formed in 2019 that convenes researchers, drug developers, regulators, and other partners to address scientific gaps in the precompetitive domain and accelerate the evaluation of efficacy and safety of new amyloidosis therapies.
• ASPIRE Industry Collaborative An industry collaborative initiated by ARC in 2021 that brings together Alnylam, AstraZeneca, Attralus, BridgeBio, Intellia, Ionis, Janssen, Novo Nordisk, and Pfizer to address urgent amyloidosis community issues through multi-stakeholder partnerships, collaborative research, and shared resources.
• Annual Amyloidosis Community Survey Program Annual international community research surveys launched in 2022 collecting data on amyloidosis patient and caregiver experiences with diagnosis, treatment access, and outcomes, reaching participants in 48 countries to date.
• Amyloidosis Patient Support Helpline A phone-based helpline (617-467-5170) staffed by a qualified social worker with rare disease experience, providing amyloidosis patients and caregivers with treatment information, resource navigation, and clinical care support.

Quantifiable outcome

• More than 6,500 patients used the My Amyloidosis Pathfinder tool to find treatment centers and clinical trials in the past year
• +3 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

18 partnerships are on record, tiered core and minor.

• Alnylam PharmaceuticalscoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE (Amyloidosis Stakeholder Partnerships for Impact, Reach and Equity), an industry collaborative initiated by ARC in 2021. Alnylam develops gene silencing therapies for amyloidosis including Onpattro (patisiran) and Amvuttra (vutrisiran).
• AstraZenecacoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. AstraZeneca develops Wainua (eplontersen) for hereditary ATTR polyneuropathy. Also provides independent educational grant supporting the Clinical Fellowship Program.
• PfizercoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. Pfizer develops Vyndamax (tafamidis) for ATTR cardiomyopathy and is involved in coordinated care and health equity initiatives.
• BridgeBio PharmacoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. BridgeBio develops Attruby (acoramidis) for ATTR cardiomyopathy and participates in health equity working group.
• Ionis PharmaceuticalscoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. Ionis co-developed Wainua (eplontersen) with AstraZeneca. Also provides independent educational grant supporting the Clinical Fellowship Program.
• AttraluscoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. Attralus develops amyloid-targeting imaging and therapeutic agents.
• Intellia TherapeuticscoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. Intellia develops gene editing therapies for amyloidosis.
• Janssen PharmaceuticalscoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative. Janssen develops Darzalex (daratumumab) used in AL amyloidosis treatment.
• Novo NordiskcoreStrategic or Co-development Partner · 1 January 2021Member of ASPIRE industry collaborative focused on advancing amyloidosis diagnosis and treatment.
• U.S. Food and Drug Administration (FDA)coreStrategic or Co-development Partner · 1 January 2019The Amyloidosis Forum is a public-private partnership between ARC and the FDA formed in 2019. It brings together researchers, drug developers, regulators, and other partners to optimize innovation and accelerate drug development through cross-disciplinary collaboration. The Forum addresses scientific gaps and unmet research needs in the precompetitive domain to aid evaluation of efficacy and safety of new therapies.
• Project ECHO (University of New Mexico)coreStrategic or Co-development PartnerARC Amyloidosis Project ECHO uses the collaborative learning model developed at University of New Mexico. The program enables expert healthcare teams to provide best-practice education to non-specialist providers through case-based learning and videoconferencing.
• IQVIAcoreTechnology or IntegrationPartnered with IQVIA to develop the ATTR-QOL questionnaire. IQVIA conducted psychometric evaluation and continues to manage licensing for the validated PRO instrument. Contact: [email protected].
• Amyloidosis Support GroupsminorGTM or Marketing PartnerPartnership with Amyloidosis Support Groups website providing details of support groups across the US for patients and caregivers.
• International Society of AmyloidosiscoreStrategic or Co-development PartnerCollaborated to develop interactive maps showing global access of approved therapies for ATTR and AL amyloidosis by country.
• Prevention GeneticsminorGTM or Marketing PartnerPartners offering free genetic testing programs for eligible individuals: Alnylam Act program (available in US and Canada) and NavigATTR program (available in US) for hereditary ATTR amyloidosis testing and counseling.
• Genome MedicalminorGTM or Marketing PartnerProvides free genetic counseling before and after testing through Alnylam Act and NavigATTR programs.
• Heartgene Sciences / Broad Clinical Labs / Mass General BrighamminorGTM or Marketing PartnerPartnership for genetic testing through Heartgene program for individuals with cardiomyopathy who suspect hereditary ATTR. Testing can be ordered and conducted without provider involvement.
• Patient Advocate FoundationminorGTM or Marketing PartnerARC refers patients to Patient Advocate Foundation for information on preparing insurance appeals.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• ALS Association: Large rare-disease patient advocacy nonprofit with a similar portfolio: research grants, patient services, public awareness, and a clinical network. Operates at materially larger scale; useful benchmark for what ARC could grow into.
• National Organization for Rare Disorders (NORD): The largest U.S. umbrella organization for rare-disease patient advocacy, with established FDA relationships and an industry council model. Comparable in patient-advocacy function but at significantly broader scale and funding depth than ARC's disease-specific focus.
• Global Genes: Rare-disease advocacy umbrella that supports smaller disease-specific foundations with tooling, education, and convening. Comparable in advocacy function, often a partner to disease-specific groups like ARC.
• EveryLife Foundation for Rare Diseases: Rare-disease policy and advocacy nonprofit that convenes industry stakeholders and runs community-building programs similar to ASPIRE. Comparable convening model but operating at a portfolio-of-diseases scale rather than single-disease depth.
• Multiple Myeloma Research Foundation (MMRF): A research-driven patient advocacy nonprofit with a comparable end-to-end model (research funding, data assets, industry collaboration, FDA engagement) in a related hematologic disease (AL amyloidosis is treated with myeloma drugs such as daratumumab). Highly analogous operating playbook.

Direct peers

• International Society of Amyloidosis: Professional/scientific society for amyloidosis researchers and clinicians, collaborating with ARC on global therapy-access maps. Directly comparable in disease focus and overlaps on scientific convening.
• Charcot-Marie-Tooth Association: Rare-disease patient advocacy and research nonprofit with a Center of Excellence network, patient registry, and pharma collaborations. Comparable in operating design and mid-sized nonprofit scale.
• Pulmonary Hypertension Association: Disease-specific rare-disease nonprofit with a comparable model of patient support, specialized provider education, accredited centers of excellence, and industry partnerships. Highly comparable in operating design and scale.
• Amyloidosis Foundation: The other major U.S. nonprofit dedicated to amyloidosis, focused on patient support, research funding, and physician education. Directly comparable mission and stakeholder base, and a likely collaborator/competitor for donor dollars and physician referrals in amyloidosis.
• Aplastic Anemia & MDS International Foundation: Rare hematologic disease nonprofit combining patient support, research funding, and provider education. Comparable in disease-niche focus, federal-grant posture, and operating model to ARC.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat7 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/amyloidosisresearchconsortium
• Xx.com/Amyloidosis_ARC

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Amyloidosis Research Consortium