A woman with blonde hair, glasses, in a black dress, sitting on a white couch, holding a microphone, speaking at a conference or panel.

Education.
Research.
Advocacy.

A series of blue wavy lines on a white background

We’re raising our voice to create a brighter future for every RRP patient and their family.

The Recurrent Respiratory Papillomatosis Foundation is a nonprofit advocacy organization dedicated to advancing the lives of patients, families, and caregivers affected by recurrent respiratory papillomatosis. Since our founding in 1991, we have worked at every level — from the examining room to the halls of government — to ensure that RRP receives the attention, resources, and urgency it deserves.

RRP is a rare, chronic, and potentially life-threatening disease with no cure. For the patients and families living with it, that reality shapes nearly every aspect of daily life. RRPF was built in response to that reality, and it remains driven by it.

We’re working to make sure no patient faces this disease without support, without information, or without a community standing behind them.

How RRPF Began

In 1991, a two-year-old girl was diagnosed with recurrent respiratory papillomatosis. Her parents responded the way families confronting a rare disease so often do — with determination. They reviewed the available medical literature, identified the institutions and clinicians with meaningful expertise in RRP, and sought out other families living with the same diagnosis.

What they found was a population of patients and caregivers navigating the disease largely in isolation — parents monitoring their children's breathing through the night, managing the logistics of repeated surgeries, and supporting children who had learned to communicate in a whisper. They also found a small but committed group of clinicians and researchers who had dedicated their work to understanding and ultimately eradicating RRP.

With no formal organization in place to connect these communities, the RRPF was established to fill that gap.

Among the families who joined early in building the foundation were Henry and Susan Woo, whose daughter Jennifer was also an RRP patient. Jennifer went on to earn her medical degree with the intention of specializing in RRP research and care. She served as President of the RRPF until her passing at age 31, due to complications of pulmonary RRP. Her contributions to the foundation and to the broader RRP community remain a defining part of its history.

Our Mission

The Recurrent Respiratory Papillomatosis Foundation works to transform the lives of patients with RRP through education, research, and advocacy. We are here to improve care for patients, advocate for non-surgical treatment options, convene clinicians and researchers, catalyze new research, and strengthen the RRP community.

Who We Serve

The RRPF serves RRP patients, caregivers, families, and the clinicians who treat them. We believe that navigating an RRP diagnosis should not mean navigating it alone, and that every patient and family deserves access to the tools, connections, and knowledge required to manage their journey with confidence.

What We Do

Global Advocacy

The RRPF team travels internationally to raise awareness of RRP among medical professionals, researchers, policymakers, and the public. Rare diseases are often overlooked precisely because they are rare — our role is to change that, and to ensure RRP maintains a visible presence in conversations about treatment, funding, and research.

Government and Regulatory Engagement

We work directly with government officials and regulatory bodies to support the pathway for FDA clinical trials and treatment approvals. Navigating the regulatory landscape is one of the most significant barriers facing rare disease communities, and the RRPF actively works to remove those barriers on behalf of patients.

Pharmaceutical Partnership

The RRPF engages with pharmaceutical companies to advocate for the development of non-surgical treatment options for RRP. For a disease that currently requires repeated surgical intervention — sometimes dozens of procedures over a lifetime — the development of effective medical therapies is not a secondary priority. It is central to our mission.

Patient and Family Gatherings

We host patient gatherings across the United States, bringing together RRP patients, families, and caregivers to connect, share experiences, and build lasting community. These events reflect a founding belief of the RRPF: that the people living with RRP are not just recipients of support — they are a source of it for one another.

Trusted Information and Resources

The RRPF serves as a reliable source of information about RRP, including the nature of the disease, available treatments, ongoing clinical trials, and the latest research developments. In a landscape where misinformation and outdated guidance can cause real harm, we are committed to providing accurate, current, and accessible information to everyone who needs it.