FARA

What FARA does

FARA (the Friedreich's Ataxia Research Alliance), founded in 1998 and headquartered in Downingtown, Pennsylvania, is a private 501(c)(3) non-profit patient advocacy and research-funding organization. Its mission is to fund scientific research aimed at treating and curing Friedreich's ataxia, a rare, progressive, life-shortening neuromuscular disease estimated to affect roughly 5,000 people in the United States and 15,000 worldwide. FARA operates a competitive, peer-reviewed research grant program across basic, preclinical, and clinical stages, and has cumulatively directed approximately $104 million into FA research while helping the broader FA community leverage $212.5 million in federal funding through advocacy with agencies such as the NIH. Its core programmatic offerings include the FA Global Patient Registry (an international registry with data hosted in Canada and accessed by staff in the US and Europe), the FA App on iOS and Android, a Clinical Trial Finder, comprehensive Clinical Management Guidelines, and the FA Global Clinical Consortium of clinical research sites.

The organization funds its work through diversified donation-based revenue streams: individual contributions from patients and families, proceeds from 42 annual community and fundraising events (rideATAXIA cycling series, Energy Ball galas, Team FARA athletic programs, FA Fest, and grassroots fundraisers), corporate partnerships and sponsorships from pharmaceutical and other companies, federal and foundation grants, and merchandise sales through an online store operated by Bonfire Funds. FARA convenes the FA ecosystem across six named pharmaceutical partners — Biogen (SKYCLARYS/omaveloxolone), Larimar Therapeutics (nomlabofusp), Lexeo Therapeutics (LX2006), Design Therapeutics (DT-216P2), PTC Therapeutics, and Solid Biosciences (SBT-586) — supporting seven distinct therapeutic mechanisms in active development. It collaborates transatlantically with FARA Europe, runs the FARA Forum and Flash Talks webinar series for researchers, and co-organizes the International Congress for Ataxia Research (ICAR), the largest ataxia-focused research conference in the world. The organization is governed by a Board of Directors and Scientific Advisory Board, with leadership continuity provided by Co-Founder and President Ronald Bartek alongside CEO Jen Farmer.

Name

FARA

Legal name

The Friedreich's Ataxia Research Alliance

Website

https://curefa.org

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

11–50 employees

Short description

FARA is a 501(c)(3) patient advocacy and research-funding organization founded in 1998 to cure Friedreich's ataxia, a rare neuromuscular disease. It funds peer-reviewed grants, operates the FA Global Patient Registry and FA App, and convenes patients, researchers, clinicians, and pharmaceutical sponsors across an 18-country research footprint.

Ownership category

akta.pro rank

Product category

Rare Disease Research Advocacy

NAICS

Voluntary Health Organizations (813212)

SIC

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

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease research
• Patient advocacy services
• Research grant funding
• Clinical trial support
• Community fundraising programs

Headquarters

HQ city

Downingtown

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations and Contributions: FARA receives donations from individuals, families, and supporters affected by FA who contribute to fund research initiatives.
2. Fundraising Events Revenue: Revenue generated from events such as rideATAXIA cycling events, Energy Ball galas, Team FARA athletic programs, and grassroots fundraisers.
3. Corporate Partnerships and Sponsorships: FARA accepts financial support from corporations in the form of grants, sponsorship, and/or professional support for educational purposes (conferences, videos, publications), fundraising purposes, and research initiatives including co-funding research grants.
4. Merchandise Sales: FARA operates an online store through Bonfire Funds, Inc. selling merchandise with proceeds supporting FA research.
5. Federal and Foundation Grants: FARA leverages federal funding and works to secure grants to support FA research, having helped the FA community leverage $212.5M in federal funding to date.

Go-to-market motion2 records

Distribution channels7 records

Marketing channels10 records

Core offering

FARA is a non-profit patient advocacy and research funding organization that funds and facilitates research to cure Friedreich's ataxia. Its core offerings include competitive peer-reviewed research grants, digital patient-engagement platforms (FA App, FA Global Patient Registry, Clinical Trial Finder), a clinical research consortium (FA Global Clinical Consortium), community fundraising events (rideATAXIA, Energy Ball, Team FARA), and the FARA Ambassador Program connecting patients with researchers, clinicians, regulators, and pharmaceutical partners.

Product overview

FARA (Friedreich's Ataxia Research Alliance) is a non-profit research advocacy organization, not a technology product company. Its offerings consist of research programs, community engagement platforms, and educational resources. The core offerings include the FA App (mobile research participation tool available on iOS and Android), the FA Global Patient Registry (research data collection platform), and the Clinical Trial Finder (research matching tool). FARA also operates community programs including rideATAXIA cycling events, Energy Ball galas, Team FARA athletic fundraising, Grassroots Fundraising initiatives, and the FARA Ambassador Program for FA patient spokespeople. Research-focused offerings include the Grant Program (competitive peer-reviewed funding), the Drug Development Pipeline (therapeutic candidate tracker), the FA Global Clinical Consortium (international research network), and the FARA Forum (monthly webinar series). Additionally, FARA operates an e-commerce store (FARA Store via Bonfire) for merchandise sales.

Differentiator

Problem solved

Functional benefit

Brands

• FA App: Mobile application that helps connect and empower individuals with Friedreich's ataxia worldwide to participate in FA research
• rideATAXIA
• FA Fest
• Energy Ball
• Team FARA

Products and services

• FA Global Patient Registry Mobile application available on iOS and Android that helps connect and empower individuals with Friedreich's ataxia worldwide so they can meaningfully participate in FA research.

Quantifiable outcome

• $104 million invested in FA research to date
• +3 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles6 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eleven partnerships are on record, tiered core and minor.

• FARA EuropecoreStrategic or Co-development PartnerFARA closely collaborates with FARA Europe in the mission to focus resources and relationships to cure Friedreich's ataxia. While FARA does not market services to non-US residents, the organizations share data and coordinate efforts on the FA Global Patient Registry with data accessed by FARA employees in both the US and Europe.
• FA Global Clinical Consortium (FA GCC)coreStrategic or Co-development PartnerInternational network of clinical research centers working together to advance treatments and clinical care for individuals with Friedreich's Ataxia. The consortium assists healthcare professionals in offering patients access to clinical research studies and provides guidance on clinical care and management.
• BiogencoreStrategic or Co-development PartnerBiogen acquired Reata Pharmaceuticals and owns SKYCLARYS (omaveloxolone), the first approved treatment for Friedreich's ataxia. FARA provides resources to help patients access SKYCLARYS through Biogen's REACH program which assists with insurance coverage and affordability.
• Lexeo TherapeuticsminorStrategic or Co-development PartnerLexeo Therapeutics is developing LX2006, a gene therapy candidate for Friedreich's ataxia cardiomyopathy. FARA shares updates on Lexeo's clinical progress including Phase I/II data published in JAMA Cardiology.
• Larimar TherapeuticsminorStrategic or Co-development PartnerLarimar Therapeutics is developing nomlabofusp for Friedreich's ataxia. FARA shares updates on Larimar's progress including positive open label data and rolling BLA submission for accelerated approval.
• Design TherapeuticsminorStrategic or Co-development PartnerDesign Therapeutics is conducting the RESTORE-FA trial of DT-216P2 for Friedreich's ataxia. FARA shares clinical trial updates and four-week IV data demonstrating clinical improvements.
• PTC TherapeuticsminorStrategic or Co-development PartnerPTC Therapeutics is involved in FA research. FARA shares community updates from PTC Therapeutics regarding their FA programs and developments.
• Solid BiosciencesminorStrategic or Co-development PartnerSolid Biosciences is developing SBT-586, a gene therapy candidate for Friedreich's ataxia. FARA shares updates through webinars and news about Solid's research progress.
• Bonfire Funds, Inc.minorChannel Partner/ Reseller/ DistributorBonfire Funds operates FARA's online merchandise store. Purchases are processed by Bonfire with a percentage going to FARA. FARA has access to purchaser reports including names, emails, and purchase details.
• Children's Hospital of Philadelphia (CHOP)coreStrategic or Co-development PartnerCHOP is home to FA researchers including the Napierala Lab at UT Southwestern mentioned on FARA's site, and hosts the annual FA Symposium with FARA. CHOP is a key site in the FA Global Clinical Consortium.
• Dr. Louise CorbencoreStrategic or Co-development PartnerDr. Louise Corben leads the FA Clinical Management Guidelines project - a comprehensive resource developed by a 12-person steering committee, 70 expert authors, and an 11-person patient and caregiver panel.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cystic Fibrosis Foundation: Disease-specific health nonprofit that funds CF research and is widely credited with accelerating multiple approved CF therapies. Most analogous peer in terms of model: rare disease, peer-reviewed grant program, drug development pipeline, and patient registry.
• National Ataxia Foundation: Direct ataxia-focused nonprofit funding research, providing patient resources, and hosting scientific conferences. Operates in the same disease category as FARA (though broader across ataxia types) and competes for overlapping donors and researchers.
• ALS Association: Disease-specific nonprofit (ALS) funding research, advocacy, and patient services. Closely comparable operating model — peer-reviewed grants, federal funding leverage, pharma partnerships, and patient registry — but at substantially larger scale.
• Parent Project Muscular Dystrophy: Disease-specific nonprofit (Duchenne/Becker MD) funding research and driving drug development, including multiple approved therapies. Closely matches FARA's model in operating approach, peer-reviewed grants, and patient registry infrastructure.
• CHDI Foundation: Disease-specific research foundation focused on Huntington's disease, operating at significantly larger scale but with a directly comparable model: dedicated single-disease research funding, pharma partnerships, and biomarker/registry infrastructure.
• Huntington's Disease Society of America: Disease-specific nonprofit (Huntington's) with research funding, family services, advocacy, and clinical network — closely comparable operating model and patient population scale to FARA.
• Charcot-Marie-Tooth Association: Rare inherited neurological disease nonprofit funding research and patient support. Comparable in scale, single-disease focus, peer-reviewed grant model, and pharma partnership approach.
• FARA Europe: European sister organization of FARA sharing the FA Global Patient Registry. Closest possible peer — same disease, same research focus, complementary geography, with direct data and governance ties.

Broad incumbents

• Muscular Dystrophy Association: Broader neuromuscular disease nonprofit that historically covered FA among many conditions. Larger and more diversified than FARA, but relevant as a multi-disease incumbent in the neuromuscular advocacy space with overlapping clinical and research networks.

Emerging players

• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization providing policy, research grants, and patient registry services to disease-specific groups. Relevant as an ecosystem player and as a competing recipient of corporate and federal rare disease funding.

Market position

Strengths1 record

Weaknesses1 record

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UC5M-Zq7J1t6VH4lGHoU5TQw
• Facebookfacebook.com/curefa
• Xx.com/curefa_org

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about FARA