Recurrent Respiratory Papillomatosis Foundation

What Recurrent Respiratory Papillomatosis Foundation does

Recurrent Respiratory Papillomatosis Foundation (RRPF) is a US-based 501(c)(3) patient advocacy nonprofit (EIN 52-1798693) founded in 1991 to serve individuals with Recurrent Respiratory Papillomatosis (RRP), a rare HPV-related disease of the respiratory tract affecting both children (JORRP) and adults (AORRP). The foundation provides community support, education, clinician referrals, and research coordination for RRP patients and their caregivers, and serves a global beneficiary population of approximately 20,000 cases. Core programmatic assets include the RRPF/CoRDS HIPAA/GDPR-compliant international patient registry (156+ enrolled patients), a curated Find-a-Doctor database, an interactive Patient and Caregiver Toolkit, a clinical trials portal, educational webinars ('Every Voice Matters' series), and a private Facebook support group of 5,700+ members. RRPF is also credited as instrumental in the August 2025 FDA approval of Papzimeos — the first-ever FDA-approved treatment for adult RRP.

RRPF does not develop or sell proprietary technology products; its technology footprint consists of free patient-facing web resources and a registry partnership with Sanford CoRDS. The foundation's research-adjacent assets include de-identified longitudinal registry data accessible to approved RRP researchers and a structured adjunct therapy information resource cataloguing treatments such as Cidofovir, Gardasil, and intralesional Avastin. Operational leadership is led by President Kim McClellan, an RRP patient who has undergone approximately 250 surgeries, alongside a board including a Director of Science, VP, Treasurer, and Patient Advisory Council members.

Revenue is generated exclusively through donations and ancillary programs. Funding streams include individual donations via a Network for Good annual campaign, the Amazon Smiles program, community-organized fundraising events, branded merchandise sales through Bonfire, and selective institutional grants such as inclusion in the Chan Zuckerberg Initiative's 2021 $13 million patient-led rare-disease grant pool. No fees are charged to patients for any program or service. RRPF operates from a single mailing address in Lawrenceville, New Jersey, with a disclosed headcount of 1-10 employees, and does not publicly disclose financial figures.

Name

Recurrent Respiratory Papillomatosis Foundation

Legal name

Recurrent Respiratory Papillomatosis Foundation

Website

https://www.rrpf.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

RRPF is a US 501(c)(3) nonprofit founded in 1991 that supports the ~20,000 global Recurrent Respiratory Papillomatosis (RRP) patients and their caregivers through community programs, a HIPAA/GDPR-compliant patient registry, clinician referrals, education, and advocacy for non-surgical treatments.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Patient Support Programs & Device/Vaccine Vigilance (PSP/PSUR support) (HLAGALAK)

Keywords

• Rare disease advocacy
• Patient support services
• RRP patient registry
• Nonprofit foundation services
• Clinical trial information

Headquarters

HQ city

Lawrenceville

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

Revenue model

1. Donations and Fundraising: RRPF operates as a 501(c)(3) nonprofit organization (IRS ID: 52-1798693) and raises funds through an annual campaign, community fundraisers, and direct donations. The foundation also receives support through the Amazon Smiles program.
2. Merchandise Sales: RRPF sells branded merchandise (swag, apparel) through Bonfire, with proceeds supporting the RRPF mission.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

RRPF is a 501(c)(3) nonprofit patient advocacy organization that supports individuals affected by Recurrent Respiratory Papillomatosis (RRP) through community building, education, research coordination, and advocacy for non-surgical treatment options. It operates the international RRPF/CoRDS Patient Registry, maintains a clinician/doctor directory, hosts patient and caregiver support communities, and provides educational toolkits, webinars, and adjunct therapy information.

Product overview

The Recurrent Respiratory Papillomatosis Foundation (RRPF) operates as a non-profit patient advocacy organization rather than a technology product company. Its core offerings center on patient support services including the RRPF/CoRDS Global Patient Registry (a HIPAA/GDPR compliant data collection platform in partnership with Sanford Research), the Patient & Caregiver Toolkit (interactive educational resource), Clinical Trials Information Portal, Find a Doctor Database (directory of RRP-specialized clinicians), Facebook Support Group community, Research News & Education Hub, and Webinar Series. The foundation also facilitates access to the first FDA-approved RRP treatment Papzimeos (approved August 2025) and maintains merchandise through Bonfire. All offerings are patient-focused support services rather than commercial technology products.

Differentiator

Problem solved

Functional benefit

Products and services

• RRPF/CoRDS Global Patient Registry
• Find a Doctor Database
• Pulmonary RRP Specialist Database
• Patient and Caregiver Toolkit
• Adjunct Therapy Information
• Clinical Trials Information Portal
• RRPF Webinar Series
• Facebook Patient Support Group
• RRPF Merchandise Store (Bonfire)

Quantifiable outcome

• Australia reduced JORRP incidence to 0.022 per 100,000 in 2016 following HPV vaccination program; in 2019 no new JORRP cases were reported.
• +3 more outcomes

Named customers6 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• Sanford CoRDS (Coordinating Center for Rare Diseases)coreStrategic or Co-development PartnerRRPF partnered with Sanford CoRDS to launch an international HIPAA/GDPR-compliant RRP patient registry (RRPF/CoRDS Patient Registry). This registry collects de-identified patient data on diagnosis, treatment, and quality of life to accelerate RRP research and clinical trial recruitment. Approved researchers can access the data through an application process.
• National Organization for Rare Diseases (NORD)coreStrategic or Co-development PartnerRRPF is a member of NORD, the leading nonprofit organization representing the rare disease community in the US. NORD membership provides RRPF with advocacy resources, policy support, and a collective voice for rare disease legislation.
• HPV Cancers AllianceminorStrategic or Co-development PartnerRRPF collaborates with the HPV Cancers Alliance, co-hosting webinars such as 'Every Voice Matters for RRP' to increase awareness about RRP and HPV-related cancers.
• INOVIO PharmaceuticalscoreStrategic or Co-development PartnerRRPF collaborated with INOVIO Pharmaceuticals during the development and FDA review of INO-3107 (INO-3017). RRPF provided patient advocacy, participated in FDA discussions, and amplified patient voices during the BLA review process. INO-3107 received Breakthrough Therapy and Orphan Drug designations from the FDA.
• PrecigencoreStrategic or Co-development PartnerRRPF worked alongside Precigen during the development of Papzimeos (zopapogene imadenovec-drba), contributing patient perspectives, supporting clinical research, and engaging with the FDA. Papzimeos received full FDA approval in August 2025 as the first treatment for adult RRP.
• American Head and Neck Society (AHNS)minorStrategic or Co-development PartnerAHNS issued a statement in support of continued HPV vaccination, aligning with RRPF's advocacy goals. The AHNS represents head and neck surgeons and experts in the treatment of RRP.
• Amazon SmilesminorGTM or Marketing PartnerRRPF participates in the Amazon Smiles program (EIN 52-1798693), enabling Amazon customers to direct charitable donations to the foundation with each qualifying purchase.
• Johns Hopkins School of Medicine (Dr. Simon Best)coreStrategic or Co-development PartnerIn late 2019, RRPF awarded a $50,000 pulmonary papilloma research initiative grant to Dr. Simon Best at Johns Hopkins to develop an in-vivo mouse model of pulmonary papillomatosis for testing pharmacologic and immunologic therapies. Dr. Best serves as a Scientific Advisor to RRPF.
• Mass General Hospital (Dr. Hartnick, Dr. Zeitels)minorStrategic or Co-development PartnerRRPF references the work of Dr. Hartnick and Dr. Zeitels at Mass General on intralesional Avastin (bevacizumab) dosing and scheduling for RRP patients, recommending that clinicians consult their published research.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• National Organization for Rare Disorders (NORD): RRPF is a member of NORD, the leading US umbrella organization for rare-disease patient advocacy groups. Both operate as nonprofit advocacy organizations supporting patient communities, advancing research, and influencing rare-disease policy at the federal level.
• Global Genes: Global Genes is a rare-disease patient advocacy alliance that builds community, education, and research programs for rare-disease foundations — closely mirroring RRPF's mission model in community-building and patient empowerment for a specific rare condition.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a rare-disease policy and advocacy nonprofit that drives federal legislation and patient engagement — comparable to RRPF's advocacy role in representing RRP patients before regulators and Congress.
• HPV Cancers Alliance: RRPF co-hosts the 'Every Voice Matters for RRP' webinar series with the HPV Cancers Alliance. Both organizations focus on HPV-related disease awareness, vaccination advocacy, and patient support — directly comparable mission and constituency.
• CoRDS (Sanford Research): CoRDS is RRPF's registry partner — a coordinating center that hosts HIPAA/GDPR-compliant patient registries for multiple rare diseases. CoRDS provides the data infrastructure that powers the RRPF/CoRDS Patient Registry, making it a core operating partner.

Broad incumbents

• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is a far larger rare-disease patient advocacy nonprofit that funds R&D, drives drug development pipelines, and supports patients — serving as a scaled-up version of the model RRPF aspires to operate for RRP.
• American Lung Association: The American Lung Association is a broad respiratory-health nonprofit that funds research, advocates for respiratory patients, and educates the public — comparable to RRPF's respiratory focus and its patient/community engagement model.

Emerging players

• Pulmonary Fibrosis Foundation: The Pulmonary Fibrosis Foundation is a rare-disease advocacy nonprofit focused on a pulmonary condition — mirroring RRPF's focus on rare respiratory papillomatosis and its engagement of pulmonologists, otolaryngologists, and patients with limited treatment options.

Others

• American Head and Neck Society (AHNS): AHNS is the medical specialty society for head and neck surgeons — RRPF references AHNS statements on HPV vaccination and partners on advocacy. AHNS serves as the clinician counterpart to RRPF's patient advocacy role for RRP.
• American Autoimmune Related Diseases Association (AARDA): AARDA is a patient advocacy nonprofit supporting individuals with autoimmune and related chronic conditions — closely comparable to RRPF in operating model (community, advocacy, research funding) for a chronic disease community with limited treatment options.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/watch?v=uG43oLZzeBE
• Facebookfacebook.com/groups/56933149473
• Instagraminstagram.com/rrpforg

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Recurrent Respiratory Papillomatosis Foundation